A Writer Still May Weave a Tale: Update

I have truly been MIA,  because all the great “material” I have gathered to write about here, along this “journey” with my mother (it is a journey, her health care aide reminds) is becoming too painful to write about.

I keep a rough log of moments but don’t seem to have the  perseverance or focus to shape these moments into actual posts. Maybe I need to start drawing again–my mother, who has now descended into quite deep depths of dementia, said to me yesterday as I was going through an old photo album with her, that I should “sketch your memories;” we have a long history of having taken vacations together in New England, and as she is an artist and I have always been drawing, we would spend long afternoons in fields sketching mountains and trees.

When I was growing up, we summered in Vermont, and somewhere I have photos of her sketching old tree stumps, a favorite subject of hers. I’m not sure what sketching my memories will translate into for me. But there is wisdom in the things she can say to me these days. As when we were talking about her years as an artists, all her paintings which she doesn’t remember are still in her studio, and she said “Well, it’s all in the process, anyway.”

Anyway, mustering myself for a bit of self-promo to keep afloat: today I am a guest over at a dear friend’s blog – a blogger who is a terrific writer. So if you’d like to visit an old post of mine, back before my mother’s dementia, when I was still able to write with some humor about this “journey,” you can read it here:   

http://www.menopausalmom.com/2014/09/wacky-wednesday-guest-post-by-sandra.html Love to all my readers, and I will try to find my way back here in whatever form calls me. Thank you for all your support as this journey with my mother seems finally be reaching its frail end. signature

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Tale Tues on Thurs: Peeing in a Cup

“Why do I have to pee in a cup?”

We were driving home from my boys’ annual pediatric “wellness” visit. Because Little Bro is entering 4th grade, he’s required to have certain forms filled out verifying he’s up to date on his vaccines, and also a urine test.

I hadn’t inquired about why I was handed a prescription for a urine analysis; it’s 4th grade protocol. Just more damn paperwork.

“They need a sample,” was all I could think of to say; my already-summer-saturated brain was stumbling toward the next of our errands, picking up staples like milk and orange juice– staples I’d forgotten, having to do the weekly shopping with the boys in tow, as school is out, and that means one or the other whining for Gummy Bears or Lucky Charms Rice Crispy bars.

The summer can begin to wear on me by week one; thus I come home with Gummy Bears rather than staples for true survival and of some minuscule nutritional value ( Mott’s gummy “medleys” made from “real fruit” instead of Gummy Bears, and “whipped” yogurts that are, yes, about as nutritious and airy as whipped cream.)

“Why not a sample of my hair or spit? Or boogers?”

“Gross, Dude,” said Big Bro, stabbing at his DS with one of those tiny little stylus stick things that will get lost between the van seats, so I will be suckered into stocking up on more from Target.

“I don’t want to pee in a cup.”

This comes out as all-too-familiar a summer whine. And makes me want to get a super early jump on school supplies for the sake of my mental health.

“Last year Mom helped me,” Big Bro said.

I don’t remember “helping” Big Bro, who is now entering 5th grade. With him, I’m apt to remember better his horror of throat swabs, when he quite literally cowers in the examining room, beneath a quilted hanging of a stupefied panda bear.

Little Bro can instantly transmute his whiny voice into the deep-throated-cool-dude one he will use on the Xbox with his Call of Duty friends (Yes, he plays mature games because his aunt bought him one, but be assured we turn off the bad language so he can retain some innocence while shooting up bad guys with machine guns).

“I don’t need help peeing in a stupid cup.”

“I didn’t either,” countered Big Bro–as they will, at the speed of bullets, counter each other– “Mom insisted.”

I looked at them briefly in the rearview mirror, barely able to see Big Bro, his little blond head bent over that tiny rectangular screen.

Little Bro was staring forlornly out the window, his camouflage army cap pulled to one side gangster style.

“Probably because I wanted it in the cup,” I said.  “Not on the ceiling.”

“Mom, but you know I have good aim.”

Yes, Little Bro, on mortal combat games. Not at aiming into a cup.

“I. Don’t. Want. To. Pee. In. A. Cup. How do you pee in a friggin’ cup? ” he whined, whined, whined.

The car felt sweltering. I turned up the air-conditioning. “Be glad at least it’s easier for you boys than us girls,…” I said, hearing just the hint of a snap in my summery voice.

Then Little Bro asked why.

He’s nine years old…Why?

We were suddenly stuck at a too-long red traffic light. “Because you have better…aim.”

Thick-as- pea-soup silence from Little Bro.

I looked at him in rearview mirror. He was staring back at me, his mouth hanging open in a befuddled O.

Really?

It was Big Bro who came to my rescue: “Why do you think girls sit down?”

Little Bro’s little O widened a bit. “They sit down?”

Seriously Dude?”

“Shut up Mr. Po.”

Now it was Big Bro whining: “Mom, tell him to stop calling me Mr. Po. Why doe he always call me Mr. Po?”

Little Bro shrugged. “You’re a Mr. Po, Mr. Po

“And you think girls have penises,” Big Bro countered–quite loudly.

I could no longer bring myself to look in the mirror at either one of them. As sweltering as the car was, it would be winter by the time the damn light turned green….

We’d already had this “conversation” a few years back, when they had seen a toddler girl naked. She’d been running through the sprinkler at a friend’s house, and I remember vividly their stunned looks of both horror and enlightenment.

Back then too, the “conversation” had taken place in the car–more precisely, in the rearview mirror. I’d had to launch into particulars, and I admit, I hadn’t liked it. Let’s face it, I would have been far more comfortable mothering in the Victorian era when these “conversations” perhaps never came up at all, and women were concealed beneath layers of stiff curtain-like skirts. Maybe because I hold my own memories of my own mother too eager to sit down with me, on the edge of my bed in my virginal yellow-plaid bedroom and explain to me about…well you know.

And my pretty plaid bedroom had felt like this. A sweltering car.

Little Bro is rarely relentless except when he “really needs” the latest Nerf gun. But he was relentless now: “Then what do they pee out of?”

I’d rather be buying him a Nerf gun.

“Their bottoms, Dude,” said Big Bro.

Honestly, I don’t know where the “dude” thing comes from. Dude sounds like a foreign word spewed from a boy who skips out onto his football field as if across a field of daisies.

Little Bro, I could feel it, was seeking me out in that damn rearview mirror. I kept my eyes trained on the damn red light.

You pee out your poop hole, Mom?”

Oh god.

Big Bro craned his head up momentarily. “Dude…”

“Well…what then?”

I waited for Big Bro to answer. But the car was so silent as we sat at the broken red light, that I could hear the little stylus stabbing at the little screen, and I realized he didn’t have the answer.

And so I began: “Well… it’s not your poop hole or your pee-pee….” don’t tell me this language is better suited toward a toddler.

“Then what?”

I looked in the mirror. Now both boys were looking at me. I have been as remiss at enlightening them about human anatomy as I am about forcing real real fruit down their throats.

“A vagina. Girls have a vagina.”

OMG the light changed. I gunned it.

Big Bro bent his head deeper down over his screen, disappearing entirely from my rearview view.

Little Bro on the other hand, sat up a little taller, nearly speechless. “That’s just…evil. Pure evil.”

I longed to reach Stop & Shop where this conversation would be dropped in favor of conning me into buying more junk food.

“Then how do girls pee in a cup?”

I didn’t know how to answer this question technically, as a girl doesn’t, well,  actually pee out her “V”… without having to launch into biological details of urethas and bladders. For which truthfully, I’d probably need a textbook.

So I said simply, “We have little tiny pee-pees.”

“Little tiny pee-pees?”

Penis, Mom. We’re not two,” Big Bro said, stabbing, stabbing, stabbing that stylus.

“That’s even more evil!” wailed Little Bro, twisting and turning in his seat. “That’s just bad…it’s Nasty.” Then he shook his head in despair.  “Why do girls have everything tiny? Tiny little earrings, itsy stuff…even tiny pee-pees….”

This was starting to feel like conversations I now have with my mother when she can insist on her cherry trees growing ginormous branches overnight, or now  having three cats instead of two.

Dementia can be catching, and I found myself saying, “Actually we pee out our nose.”

“You pee out your nose? That’s not evil, that’s a…a..that’s a fail!

(If you’re not up on latest hip talk, “fail” refers to when you do something so uncool as to zip up your hoodie.)

When we got out of the car at Stop & Shop, Ryan made a fist with his hand and held it between his legs to illustrate where, yeah, girls would pee. He at least seemed to remember something about the toddler girl incident….

It was a relief to be out of the stifling enclosed walls of my momma minivan. “After this, who wants Friendly’s for lunch?”

“Seriously?”  Little Bro stomped off to get a shopping cart. “I’ve lost my appetite.”

Big Bro’s other gerbil had just died and I hadn’t told him yet. I’d been putting it off, but suddenly I was super eager to change the subject, even if it meant dramatic tears and, as soon as we got home, having to weather a funeral on the side of the house, while Big Bro  “carved”  an epitaph into a stone with a permanent marker.

 

 

 

 

 

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Tale Tues: Dementia and Dependable Depends

“Have you seen your mother’s vagina?”

My mother’s aide was calling me, and this question, a proclamation really, was loudly blazoned via bluetooth–the mother of all microphones–throughout my minivan, just as I was dropping the boys off at school.

If the call had come through three minutes earlier, both my boys would have heard it all. Big Bro might even have been distracted enough to abandon his frantic search for his latest baby tooth which had, literally, just fallen out in the van. Here’s how that scenario would have gone:

“Gramma’s what?” (depending on whether or not Big Bro, at the tenderish tough age of ten, really understands yet about the big girly V, as he still thinks girls are gross).

I can imagine better Little Bro, at the buck-toothed-silly but mature-beyond-his-years age of nine, asking point blank: “What’s wrong with Gramma’s vagina? Is it okay?”

Luckily, Big Bro did find his tooth before this bluetooth call, miraculously, amongst the bits of gravel from their snow boots and dried Christmas tree needles (Yes, it was June, car had not been cleaned all winter).

And Big Bro then skipped off happily into school, first to head to the nurse’s office to retrieve a cool plastic tooth necklace which later he would come home parading:

tooth

So I sat in my dirty momma minivan, watching until the boys safely had disappeared inside the school, trying to decide whether this question about their Gramma’s – my mother’s – vagina was indeed a rhetorical question rather than a query that really needed answering.

The fact was, the previous week when my mother had been hospitalized for a kidney infection, I had glimpsed her “V” more times than I care to count; when she hadn’t been sitting on bedpans, nurses were whipping out wet chuxs (like pee pads for puppies) from beneath her sore bottom. She had become no more self-conscious about her exposed privates than my boys had even been about their spritzing pee-pees on the changing table.

But no, I hadn’t seen up that close, to perceive that her V was “red and swollen,”  as her aide went on to describe, as I was pulling out of the school parking lot, turning onto main street, and forgetting where I was going. Her aide went on to make tskking sounds of not disgust, but clearly great disapproval: “They let them sit too long,” she said, meaning the truth about incontinent hospital patients.

Incontinence. “It’s to be expected,” her aide had said–as if the “expected” were something that could soothe me–when she’d first asked me to pick up a package of Depends.

Witnessing this incredibly slow demise of my mother, I have never found anything at all to be “expected” about what has begun to feel like an actual physical disintegration,  of a woman once vibrant and strong. Certainly the dementia was never expected, her nonsensical insistence about the cherry tree outside her window sprouting ginormous limbs overnight, or people mowing her lawn at 3 am.

And never this, my mother in…diapers. Actually, the “Incontinence” aisle is a bit different from the diaper aisle. Nothing bright and colorful about the packaging, no cute pictures of rotund baby bottoms. Though the assortment or brands and sizes can be as mind boggling as that for preemies, newborns, toddlers, pre-toddlers…. It’s one thing to figure out your baby’s size — but your mother’s?

On my first foray down the “Incontinence” aisle, I was not fooled by the genteel commercial packaging of uproariously happy aged ladies sipping coffee, and of sleek modern tan couches covered with super-absorbent chux. Because I knew this: There was no way in fiery hell, my mother, even in her demented stated, would agree to wearing what she would know very well was essentially, yes, a diaper.

I settled on what seemed a fair compromise: what looked like gorilla-sized sanitary pads.

“These are pads,” her aide railed when I presented them to her the following week on my weekly visit. “I said Depends.”

My mother’s aide can claim she now knows my mother better than I do.

Not this time.

“You will never get my mother into diapers,” I said.

She handed me back the package with the receipt. “Please buy Depends. The brand.”

I relented, as thankfully, I would not be the one who would actually have to talk my something mother into wearing the damn Depends.

Back to the incontinence aisle (after returning gorilla pads, grateful that the twenty-something-still-acne-prone cashier kid didn’t look me over as if the pads were for me).

Just so you know, if you’re female and ever in the position of having to depend on Depends, there are far too many dependable Depend choices. Number one choice, what size? Because there is no small or medium size. There is only a small-slash-medium. Then large. Extra-large….

What style? Well that depends. On whether you plan on wearing a Depends beneath a pencil skirt–then you might need to slink into the Depends “Silhouette Briefs.”

Then there’s Depends “adjustable underwear,” for the woman on the go; you can take them on and off without having to remove your shoes!

If you need extra extra Depend protection, there’s “Protection with tabs” Depends (with a wetness indicator! Extra leakage protection! Six-tabs for “discrete open changing!” As if “discrete” and “open” aren’t oxymorons….)

The Depends choice which most closely mimics real underwear seems to be the “Fit-Flex.” I grabbed a package of those.

Since those initial incontinence-aisle forays, shopping incontinence has become as second nature as writing checks from my mother’s own checkbook with the kitty sticker on it. Both hateful stuff, but stuff, for the sake of my mental health, I’ve eventually learned not to think twice about.

Her aide told me how she finally got my mother actually to wear the Depends. After an accident one night, when my mother had to change her nightgown, sponge bathe, then have all her sheets changed, her aide opened the package and held up a pair of the paper lacy underwear: “They are so pretty,” she told my mother. “Wouldn’t you rather wear these pretty things and then not have to worry?”

While my mother has never been a pretty-lacy but more of a practical-cotton-underwear wearer, she had agreed. Which frankly still stuns me. But perhaps no more stunning than the first time she’d falsely accused me of taking the locks off of all the house doors  so that she could just run away, as well as have strangers steal her silver.

Maybe her aide does actually now know my mother better than I do. Or she knows the mother she has metamorphosed into, a someone I have never known.

And so I’ve come to trust my mother’s aide’s advice implicitly. Because this strong, ultimately compassionate, woman is a veteran of taking care of elderly and dementia patients; she has earned the right to pride herself on how she is able to rehydrate wrinkled dry skin with daily baby oil body rubs; pamper aching arthritic feet with epson salts; ease bed sores with her most trusted barrier cream Calmoseptine, the cream, the one she has sworn by with all her past (ie. now dead) demented incontinent clients.

So I continue to do as I’m told, as when she announced over my minivan mother-of-all-mics bluetooth, to pick up a tube of Vagisil. As well as more Calmoseptine. And Depends.

Since that original Depends conversation and now the big V one, we have had many discussions about my mother’s bodily functions. I am not entirely uncomfortable with these discussions, as I am familiar with them from when my children had their own share of diaper rashes, as well as the constipated episode (and its oxymoron). It was all part of motherhood. Now it has just become part of daughterhood.

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Tale Tues: A Broken Wrist and Brilliant Fish

“Oh, look at that one!” My mother pointed a crooked arthritic finger at a brilliant blue-and-yellow fish circling the tank. I had wheeled my mother around so that she could face the voluminous salt-water tank, the centerpiece of the orthopedist’s waiting room:

TANK

Every fish that swam into her view was as remarkable as if it were swimming into her line of vision for the first time: “Oh look at that one, with the pink fins!” The pink-finned fish was circling the tank for maybe the tenth time since we’d signed in for our appointment.

We were at the orthopedist because my mother had broken her wrist the previous week from another fall. I am naive in I assuming falls are avoidable now that she has a full-time aide. “I’m not an invalid!” my mother had screeched when her aide found her walking with her pants down around her ankles.

My own guess is that my mother had been heading toward her bed where she had planned to sit down to take off her pants, but for some reason had started the taking-off-pants process in her walk-in closet. “That’s dangerous,” her aide had said, no doubt sounding to my mother as if she were being  reprimanded.

When my mother yelled as she can do, her aide left the room. Moments later, my mother went down. It’s hard to know who and if anyone is to blame; my mother can be very difficult, as quite understandably, she does not appreciate a stranger living in her house. And the aide does not want to upset my mother by escalating incidents into arguments. My mother’s screeching can be grating…pulverizing, even to the most capable and patient of aides.

Needless to say, her aide now will forgo respecting my mother’s wishes for the sake of her physical safety. In the emergency room, my mother had her arm stabilized with only a splint, to allow a week for the swelling to go down.

We had been told to follow up with an orthopedist. I was incredulous. “You mean like an office appointment?” Funny how even medical folk fail to realize what an office trek actually entails for a frail 95 year old. As did even my mother: “Oh I can walk for goodness sakes, just drop me at their door.”

My mother not only can forget the last two minutes, but she can forget that she can barely walk now with a walker. Even with the new newfangled platform attachment to support her broken wrist. Even before the break, her walker had become cumbersome. Trips to the bathroom are now laborious excursions. She opts to spend most days lying on her bed, as even the trip to her favorite sunroom chair has become too much of a trek.

Day of dreaded orthopedist appointment: It took a full half hour for her aide and me to navigate her down the three steps from her house. My mother could not walk the last five feet to my car. Luckily (very much so), on the keen advice of her aide, I had rented a transport chair (more convenient than a wheel chair! Fits through bathroom doorways!) and happily we were able to wheel her the rest of the way to the car. As happily as I used to wheel my toddler in a stroller.

Back to the fish: Waiting in the waiting room in front of the big tank, my mother could not remember falling, and would ask over and over why she was wearing this unwieldy splint contraption. But whatever is happening to my mother’s mind, she still enjoys the visual. She marveled at the fish as she had magnificent sunsets through her bedroom windows all winter, the way the light had splintered between the bare trees.

I was reveling in her marveling, as I used to with my kids when I’d take them to the aquarium. Or just the local pet store, where the tiny rainbow fish were even marvels. As my mother weakens, as her mind fades, our role reversal is becoming more pronounced. I see a psychologist now who is helping me through this role reversal process. And every once in a while he’ll check in with: “Do you still find moments when you two can enjoy each other as you used to?”

Well, perhaps the answer now is no. But we are able to enjoy each other in a new way. In a way that our roles actually have now reversed. “Look at that one,” I said as the blue-and-yellow fellow swam back into view. As if for the first time. As I only ever remember marveling, back then when it was actually for the very first time, with my own young children.

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Tale Tues: You Think I’m Crazy

My mother called. While I was digging the gizzard out of a chicken, or whatever that nasty nauseatingly brownish-gray innards thing is.

“We need to talk about this. Why you would  do such a thing.”

Do what, Mom?

“Take the locks off all the doors. Why would you do such a thing?”

I didn’t, Mom. I only took the one off your bedroom door because you lock yourself in  so your aide can’t get to you and you can fall….

“It’s not just my door. You’ve taken the locks off all the doors in the house, so anyone can come in and murder me.”

Murder.

She often thinks to call now at dinner time, when I’m simultaneously gutting, then skinning the fat off a chicken; yelling at the boys to stop shooting Nerf bullets at the living-room mirror; shoving the dog away from the overflowing garbage can; and cradling the phone on my shoulder so I can get the chicken into the oven before the next full moon.

Mom, why would I do that? Take all your locks off?

“Because you think I’m crazy and might wander off.”

If I thought you would wander off, wouldn’t I be sure that the doors were actually lockedI tried to laugh. Anyhow, I mean, wouldn’t it make more sense for me to actually bolt them from the outside?

I was relieved then that she actually laughed too, although I wasn’t sure whether she was laughing because she actually finally did see this as nonsensical, or because she didn’t actually understand what the hell I was talking about.

But then she said, “Well, I guess your mother is going crazy.”

I reassured her–tepidly–that she wasn’t going crazy, and we went on to talk about more sensical things; she asked me about the boys, and I told her about how Big Bro refuses to help me clean his frog’s tank; Little Bro leaves his dirty underwear lying all over the house; that I was about to roast a chicken, and she reminded me to chop up an onion to put in the cavity, and then she said, “But you do need to put the locks back on the doors. When are you going to do that?”

The featherless, naked, headless chicken struck me as exceedingly sad and pathetic prone in its cold baking pan. I’d forgotten to preheat the oven.

On another evening, she called just as I’d  remembered the morning’s laundry I’d forgotten to put into the dryer, around 7 pm – wondering why “they” hadn’t brought her breakfast yet.

I’ve given up on the argument about the “they,” that there is just one aide whom my mother thinks is several different aides, some of whom she likes and some she despises because they’re “always telling me what to do.”

I’d burned the rice while remembering the laundry, and was salvaging whatever hard crusty grains I could scrape from the pan, when she said, “I’ve been waiting here all morning for my breakfast and I’m hungry.”

It’s dinner time, Mom.

“But it’s so light out.”

It’s light out earlier now because we’re going into summer soon….

“Well then what time is it?”

Seven, Mom. At night.

“Oh, I am going crazy.”

No, you’re not. But each time I can say this, I sound all the more tepid.

“I am! But I don’t know why they haven’t brought me breakfast!”

When my mother isn’t worrying over the door locks or whether it’s breakfast or dinner time, she might be hearing things. She can hear people mowing her lawn in the middle of the night: “Oh, they make such a racket!”

I try to reason with her then too, as I do about the door locks and the time day–that no one is going to mow lawns at 2 am, never mind the fact that it is too early in the season for lawn mowing. That her lawn is mostly mud and scattered gravel anyway, where the snow plows mistook the lawn for the driveway.

“They were mowing. Don’t tell me they weren’t mowing.”

I don’t know why I keep trying to reason with her on these things. I’ve read enough articles at this point, about all the things you should and shouldn’t say to someone with dementia. And I fail in every way. I can’t help it. I continue to try and reason with my mother because I want my mother back.

“It’s the disease,” her aide likes to remind me. As if I need reminding.

Though maybe I do need reminding. Because when I’m with my mother she can still be my mother: “Your sweater is not buttoned correctly,” she can say when I first arrive on my weekly visits, and no doubt she is usually right.

And she can still worry about me as only a mother can:  “You don’t need to worry about me, honey. I can take care of things myself.”

Which of course,  only make me worry more, as she can go on to say that, if she fires the “staff” she has now, she can hire someone herself, from the local job-wanted ads, and I think how I have to start taking away her newspapers…and then I want to cry. Because I wish so badly that this were the truth. That she still could be in control of her life. Like a hot potato, I’d gladly toss that control back at her in a second.

And then there are those moments–new moments now–that I’m not prepared for; when she is still my mother. But my mother from the past:

Yesterday, when I was visiting, she asked, “So what classes are you taking now?”

Classes?

“You’re going to college soon.”

We were sitting out on her deck. The first day warm enough for her to actually be outside.

We were sitting in the sun. She was lying on a lounge chair piled up with two layers of cushions as otherwise she would be unable to rise up off of it.

I was facing her in an upright chair. Sipping bottled water to keep hydrated, as often by the time I’m back on the road at the end if these visits, I am depleted and dehydrated.

My mother can accuse me of taking off locks and insist on lawn-mower racket at 2 am. She can confuse the time of day.

But this was the first time she was confusing me with myself in another time and place.

I said, “Am I in high school?”

“Well, yes….”

I waited. To see whether she could reorient herself.

She didn’t. Or couldn’t.

So I laughed and told her that if I were still in high school, she wouldn’t yet have her two gorgeous grandsons.

She laughed then too. At least she can still be reoriented — if only with reminders.

But then she said: “I’m beginning to wish now that I’d died before this. Before my mind started to go.”

I had to look away from her. Down at the splintered deck. No, Mom. Please. The only words I could muster. As if tugging up tangled bed blankets against an ice-cold breeze.

“I’m scared,” she said. “It’s frightening.”

I couldn’t speak.

But then she did. Looking out at her yard. At the white blooming dogwood tree. The yellow daffodils brilliant against the deep green of the woods.

“But I still do like this…spring…”

 

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