The Shower Stall Mystery Dateline: Caregiver City, Planet Aphasia

 This article was first published at Yahoo Contributors but they are going out of business and the rights have reverted back to me. So if it seems out of order to the rest of the content in this blog, that's the reason.

I wonder if there are any statistics on how many female caregivers stop shaving their legs when we have to start shaving our husband's faces. Time constraints are as good as any other excuse for our apathy about not shaving what can be hidden with slacks or for not applying makeup and perfume. I can't remember the last time I took a leisurely bath where I had the time to lather up my lower limbs and run a razor up in smooth, slow strokes like a model in a Gillette commercial. While helping my husband, Don, in the shower today these were the thoughts that ran through my head as I looked down at my legs expecting to see the natural, European look. I was shocked to see they are bald as a proverbial billiard ball. Oh, ya, I forgot that menopause takes the hair away and it doesn't come back.

I've been shaving Don's face since he went on the blood thinner, Coumadin, even though his occupational therapist wants him to do all his own grooming. But he's so clumpy shaving left-handed and it's really hard to make time for extra trips to ER. Besides, we have a new wheelchair accessible bathroom and the color of blood would clash with the décor and if I let Don do it all on his own, our water bills would be around five hundred dollars.

Our shower routine: I help Don transfer into the shower, shave his face, scrub his back, and pull the curtain closed so that he can do the rest of his shower alone. Then it starts---those sound effects, the kind like Meg Ryan made in her famous movie scene where she's faking an orgasm in the restaurant. The first time I heard Don moaning and groaning I thought, "Oh, God, he's having a private moment and I'd rather not know about." This went on with every shower for a couple of weeks before a voyeuristic moment made me slowly draw the shower curtain back to peek inside. There sat Don, eyes closed, doing his moaning and groaning routine only he wasn't---well, you know what he wasn't doing. He was shampooing his hair! I can be so slow on the draw. It hadn't dawned on me that all Don was doing was an imitation of the shampoo commercial that is imitating Meg Ryan's orgasm scene.

Time to dry off---Don does it all but his tush. But I'm on the creams and ointments committee, so I have to be there. I start with his feet, and work my way up. I apply the Naftlin gel for the toe nail fungus he picked up at the hospital and that his diabetes doesn't want to give back. Next comes the Nystatin for jock rash. That was fun the first time I had to have Don's doctor look at that---all three of us with our noses practically down in Don's crotch. The doctor tells me it's common for wheelchair bound guys to have a perpetual case and it won't go away without air. I've tried to get my husband to sleep commando, but he picks this stage of his life to get modest. Men! Go figure.

Next I apply a coat of Betadine antibiotic to the bruises and scratches on his paralyzed arm that are caused by our lap sitting dog and the Coumadin. Someday I'll probably get investigated by Social Services and I'll have to prove that the bruises are not caregiver abuse---hey, maybe I should knit the dog a set of booties. At this point in Don's routine I think, "Did I miss anything?" No, Don is applying his Stetson antiperspirant to his left arm pit. You should have seen him the time I brought home another brand and his aphasiac brain couldn't tell me in any other way but to throw it across the room day after day until I figured it out. His vocabulary is around twenty-five words and "don't buy this crap anymore" isn't one of his working phrases.

Following the left arm pit, comes his right arm pit royal ritual. No antiperspirant here or the fungus will start back in again. No air gets to the pit when you can't move an arm. So, it's ten powder puffs full of Johnson's Baby Powder. Not nine. Not eleven. I tried explaining the danger to our lungs of inhaling that white cloud in the room but for some reason, Don's aphasiac brain counts everything in tens. Now I just hold my breath and hope that he doesn't pick bath time to start learning to count to a higher number. And people wonder why we take two hours to shower.

After our showers today, we got distracted by a fat cat with long brown hair and four white feet who was stalking the neighbor's bird feeder and all three of us---the dog, Don and me---stopped what we were doing to watch until the cat got bored and lumbered across our back yard. The three of us followed his path, going from window to window until the cat caught Cooper's eye and they tried to stare each other down. The cat won.

Being Saturday, we headed into town to go to our favorite restaurant for omelets. I parked in the last handicapped space, transferred Don to his chair and when we got to the door a waitress barred the way and told us they were doing some painting over the weekend and were closing early.

"If you had just gotten here five minutes ago," she said, "We could have served you."

On the way back to the car I was cursing the cat in the yard and promising Don I'd shoot the darn thing the next time I see it. Damned cat cheated us out of our omelets! Don, he started yodeling at the top of his lungs. The man can't talk but he still finds ways to made fun of me when I get into one of my titters.

We drove to our next favorite restaurant and as I lowered the wheelchair with its Bruno lift, it got hung up on the trailer hitch. While I was trying to decide if there was a beefy guy near-by to help, Don was sitting inside the Blazer joyfully teaching himself the four letter words I had used to describe the cat. I was pleased when he came up with one of his own.

Inside the restaurant Don smiled across the table and I saw the want-to-cowboy he used to be and I thought about how lucky I am that I didn't have to purée his egg rolls and thicken his tea. He's come a long ways since the stroke. I looked down at my plate and saw a couple of tiny cubes that looked like clear gelatin and I wondered what they were. I ate one. Tasteless. I ate another, and then it dawned on me. They were eatable computer chips that program people to drive to their restaurant every time a UPS truck comes down the street.

Back in the Blazer after lunch, Don had to pee. We drove around to the back of the grocery store, before going in, and I pulled up to our regular spot where he could use his urinal. I felt like a male dog that needed to remark his territory as I poured the pee at the base of the 'No Parking, Fire Lane' sign. I laughed, thinking, "If only the people who believe I always live by the rules could see me now." It may not have been a bra-burning march or a stop-the-war demonstration from my youth, but I can still pull off a little civil disobedience.

Jean Riva © 2006

The Ambassador from the Planet Aphasia

 This article was first published by at Yahoo Contributors but they are going out of business and the rights have reverted back to me. So if it seems out of order to the rest of the content here, that is the reason.

Today was get-out-of-the-house day. We've been snow bound. Oh, not really but it makes a better story than saying we had no place to go since Friday. Today was different. We had a mission. We had to get haircuts and lunch and visit the bookstore before they were tempted to take us off their speed dialer.

After our haircuts, we were in Cracker Barrel waiting for our chicken fried chicken and biscuits when over the sound system came a guy vocalizing, "I've got spurs that jingle, jangle, jingle as I go ridin' merrily along and they sing, oh, aren't you glad you're single and that song ain't so very far from wrong."

"Don," I asked my husband, "Is that Bill Wills singing?"

"Late, late night. Girl, girl, boy," he answered.

"Okay," I thought, "what does that mean on the Planet Aphasia?" Will someone tell me why it takes fifteen minutes to translate something like that? But it did finally come to me. Don's enigmatic reply was telling me that the cowboy singing was Tex Ritter. It's really quite cleaver how he can find ways to communicate with so few words at his disposal. 3's Company comes on TV late at night and John Ritter (plus two girls) starred in the show, and John was the son of Tex Ritter. This is what it's like living with my husband's language disorders, aphasia and apraxia; he speaks in aphasic tongue and I translate it into earth English. It's daily, mental gymnastics.

After we got our coats on to leave the Cracker Barrel, Don did one of his famous 'roll ups' to our restaurant mate's table. "Handicapped. Six---no. Five---no. Four! Vegetable," he said as an introduction.

I quickly translated: "My husband had a stroke four and a half years ago and we were told that he'd be nothing more than a vegetable."

"You sure fooled them," the woman beamed and Don beamed right back at her.

"GM. Snowplow," Don replied and I translated: "My husband worked at GM and had a commercial parking lot maintenance business on the side. He was a workaholic."

"Oops!" Don chimed in while using a hand gesture that punctuated my sentence. Then he drew his shoulders down, making himself look like a little boy getting balled out by his mother and said

"Oops," again. That time in a comical tone. Everyone laughed.

"Don," I nudged him along, "we've got to get going now." He didn't want to leave but we said our good-byes. They said their "good lucks" and "you're doing greats." The strangers didn't know it but they had just met the Ambassador from the Planet Aphasia.

Out in the parking lot, I got ready to load Don up and move him out. I peered across the street, judging the distance to our next stop to be less than a city block. I saw the bungee cords in the back of the Blazer and not for the first time I speculated that I could hook them up to Don's wheelchair (with him still inside) and just pull him along behind the car. This would save me a lot of work if I could do without a few chair-to-car and car-to-chair transfers. But it's January and the wind chill was a serious factor so I decided to put that experiment off to warmer weather.

On the way across the street Don was getting sleepy and I thought, "Oh, boy, I get a vacation!" So, I booked a suite at Linens & Things and left my man in the car while I went inside to shop. I was having a good time, too, pushing a cart and doing my best imitation of a Stepford Wife. I wasn't wearing the classic sun dress, luminous lipstick or spiked heels but I did have an imaginary book on my head so my posture was perfect. As I lusted over a stainless steel toilet brush holder a song from long ago came over the sound system. It could have been Dianna Ross and the Supremes crooning, "Baby, baby, where did our love go wrong? Baby, baby, don't leave me alone." That's when I remembered poor Don out in the car.

"Oh my God!," I thought, "I've been in here so long that the floor boards on our three year old Blazer have probably rusted through and he's gotten over come by exhaust fumes!"

I rushed to the cashier and wrote her a check. The date I put down was two days behind and I wondered how many days I'd have to forget before I'd cross over from 'flaky' to 'senile.' She asked for my driver's license. I mistakenly handed her Don's picture ID. The girl looked at me then down at the card, studying it carefully. Quickly I pulled the right card out of my wallet before she could tell me that I looked better with the mustache.

The bookstore was our next stop and by the time we were ready to go home from there, I was so tired that thoughts of bungee cords and thrill-riding Don all the way home seemed pretty darned do-able.

Christmas Letter to Family and Friends

Season Greetings!

Before sitting down to write our annual Christmas letter, I reviewed last year’s letter to make sure I couldn’t just say “ditto 2010” and be done with it for this year, 2011. No such luck. Then I searched a website that prints submissions of the worst Christmas letters ever received just to make sure one of ours wasn’t sent in by someone on our mailing list. Thank you all for resisting that temptation.

2011 in review: We didn’t do anything as exciting as hike the Appalachian Trail---unless dreaming about it counts---or as pitiful as sitting propped in chairs with bibs around our necks---unless nightmares count. So I guess you could say those facts speak volumes about our ho-hum lives here in our villa where it was discovered that hammers come in handy for opening childproof caps and our conversations often sound like this:

"Windy, isn't it?" I say to Don and the dog.

"No," Don replies, "Thursday."

And Levi in dog-speak says, “Me too. When is someone going to fill my water dish?”

We did accomplish one noteworthy thing this year. We saved ourselves from the embarrassment of someday having our stuff featured on the TV program Storage Wars---that’s the show where they auction off the contents of storage units when someone falls behind on the rent. With the help of a good friend, Tim, we emptied out our storage unit that had been sitting untouched since Don’s stroke. This was no small weekend project. The unit was ten by twenty-five feet and Don campaigned to save just about every other item enclosed from going on e-Bay. Thankfully, he lost most of those “keep it/sell it” duel of words and we no longer qualify to be featured on the TV show Hoarders.

That was the highpoint of the year. As for the low point, this year will live in infamy for being the Year of the Chronic Hives. I’ve officially had the hives almost every single day of 2011. After a regiment of taking three different antihistamines daily, seeing four doctors, submitting my body and blood for umpteen tests, and getting a prescription that lists the main side-effect as “suicidal thoughts”---as if the hives don’t already make you want to slit your throat---I learned that Baby Oil Gel with Lavender and Camomile from the Dollar Tree store works best at taming the itching. Thank God for that discovery because a few times I’ve come close to ordering a gorilla suit to wear out shopping just so I’d be excused for scratching assorted body parts in public.

Aside from the above mentioned highs and lows, 2011 brought us a succession of ordinary-to-lovely days, the kind that make you happy to be alive and living in a place where you can write a silly Christmas letter to touch bases with family and friends. Wishing you all a joyful Christmas and a happy New Year!

With Love,

Jean with Don’s seal of approval

Lint for Breakfast

Why do old people pick at lint? When my husband’s mother was in a nursing home she would walk the halls and pick up every piece of lint on the floors. It was a hobby or an obsession, I could never figure out which. Now, my husband is doing the same thing. Where ever he sees lint, he picks at it….usually when he sees it on me. Okay, so I’m not the queen of good laundry habits. I forget to check pockets and I sometimes wash Kleenex and we all know how that works out. But I do my best to remove the evidence of my laundry day crimes before returning the clean laundry to the closet. What Don picks at are the little hairs that fall when you brush your hair or the nearly microscopic stuff that only a person on a mission can find. It drives me crazy!

Yesterday I reached my limit of lint picking and I---well, sort of raised my voice at Don.

“Quit picking! We’re not chimpanzees who need to pick fleas off each other to control the little ugly insects from eating our flesh off. Lint is harmless. I like lint! God, if anthropologist Jane Goodall studied old people like us she’d have a hard time telling us apart from a couple of orangutans in the wild! Next thing I know you’ll be eating my lint for breakfast!”

He looked at me like I’d turned into Linda Blair in The Exorcist. I checked the floor. No, there wasn’t lint filled, green vomited all over the place. I was still me and I had just yelled at a man who was only trying to help me primp---ala monkey style---for a graduation party we were going to. So I did what I always do when I’ve made a fool of myself. I tried to turn my anger into humor. Scratching my ribs cage and doing my best imitation of chimpanzee chatter, I shuffled off as if nothing unusual had just happened. ©

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Sourpusses and Something to Laugh About

For the past three or four years I’ve been telling everyone that I’m almost seventy when, in fact, I’ve still got two years to go before I effortlessly float into Septuagenarian Land like a feather on the wind. At least that's the plan and, no, I don’t have a propensity for lying. I’m just trying to avoid the depression of achieving that benchmark that my mother went through on her 70^th birthday. I figure after the long prelude I’m giving myself to becoming a septuagenarian, I’ll be so used to saying the big S word that I won’t even notice that on my 70^th birthday I’ll be just around the corner from death. Yes, Virginia, youth is wasted on the young.

They say that laughing every day keeps you young. Okay, I can do that but I ran into an older-than-me woman the other day who probably hasn’t cracked a smile in decades. I had stopped at a VFW roast beef dinner that is popular with the after church crowd in the area and just before I got to the first course in the cafeteria style line, the woman cut in front of me and brought three other people with her.

Looking down her nose at me, she said, “You’ve been here before so you can go to the end of the line.”

“No I haven’t,” I replied. “I just got here.”

“Really? Well we’re here now,” she shot back, “we’re not moving.”

As I contemplated the fact that I’d just been treated like chopped dog food, her husband whispered an apologized for her behavior and I was washed in sympathy for the man. She’d probably been acting like a prick her whole life and he’d been humbly mopping up after her since their marriage. They’d obviously just come from church which got me to wondering what that woman did when the minister is giving his sermons. Does she mentally make out her grocery list when he’s talking about love thee neighbor and other Golden Rule type anecdotal stories? Does she visualize the choir director in his underwear? Love, peace and fellowship---what the hell do those things mean to a woman who acts as if rudeness is her God-given right?

I didn’t say it, but it put a smile on my face to think about what I should have said to the sourpuss, line cutting church lady. I should have said: “That’s okay. Octogenarians like you are always in a hurry since you’ll be meeting your maker any day now. Me, I’m still a sexagenarian so I’ve got more time here on earth.” ©

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Tale of Two Bad Boys and a Song

I call her lollypop, lollypop, lollypop, oh lolly-lolly-lolly
Lollypop, lollypop, oh lolly-lolly-lolly
Lollypop, lollypop, oh, lolly-lolly-lolly
Lollypop

Handicapped, handicapped, oh handi-handi-handi
Handicapped, handicapped, oh handi-handi-handi
Handicapped, handicapped, oh handi-handi-handi
Handicapped

Same tune, different lyrics. Guess which set of lyrics belongs to Don and which set belongs to Daddy Cool---at least I think it was Daddy Cool, I could be wrong.

It’s not one of Don’s favorite or most frequent one-word aphasia songs but I hear it often enough to recognize that singing it is my husband’s way of dealing with stroke-related frustration. Last night The Handicapped Ditty was the last thing I heard before drifting off to sleep---the second time. I had gone to bed several hours before Don and when he came to the bedroom I woke up with the snapping sound of his hearing aid box closing.

“Did you remember to let the dog out?” I muttered, half asleep.

“Oh,” he replied as he backed out of the bedroom in his wheelchair.

Some where in between the bedroom and the outside door something happened with the dog that had Don singing his version of Daddy Cool’s song. “Handicapped, handicapped,” Don vocalized all the way back to the bedroom. It was like a lullaby that wooed me back to sleep.

When I'm a wake and listening to his song I'm often struck by the surreal-ness of hearing such a happy little tune sang with such a sad word repeated over and over again for the lyrics. It's inventive of Don's aphasic mind to be able to put the two together and have a tirade of sorts. But last night I was too sleepy to think these thoughts or to play twenty-one questions to find out what brought it on.

It wasn’t until this morning that I figured out why Don was singing The Handicapped Ditty. The dog either put up a fuss and wouldn’t go outside for him or he was a no-show because the half deaf mutt couldn’t hear Don calling at the door. Or Don could have been calling out "Jean" instead of "Cooper" as he often does and the dog took him at his word. Whatever happened, the evidence was clear that he couldn't get the dog to go out i.e. the darling dog had left his calling card on the carpet, in a nice little pile for the entire world to see or me to step in in the wee hours of the morning. Darn! What do you do at the exact moment of discovery? I couldn’t bawl the dog out. He was still asleep. I couldn’t bawl my husband out. He, too, was still asleep. So, I hopped into the bathroom to give my foot a shower as I contemplated whether to cut the two guys in my life a break or wake them both up with a rousing rendition of my own frustration song:

Shrew-Lady is raising cane in the place
Says you’re both in the dog house again
So wipe those smiles off your guilty faces
And listen to the words of her crazy song.

Jean Riva ©

Painting by Edwin Landsee, 1840, Trial by Jury

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American Graffiti

It’s Thursday and I’m having a vacation day from reality, I’m reading my old diaries. Its fun to spend an entire day wasting time and it makes me feel good to be reminded that somewhere out there in the great beyond is another version of Me who can still come alive from time to time. She may be an innocent kid who put codes in the pages of her diaries that the older version of Me is having trouble deciphering, but I still like her. I laugh at her and laugh with her.

The two years before and after I turned fifteen was my ‘American Graffiti’ era. If the movie by that name was about my life, I would have been Carol, the fourteen year old with the crush on John, the cool tough guy with a soft spot for kid sister types. My “John” was actually named Steve. Cool, sexy, dark-eyed Steve. He had one parent who was a full blooded Native American back when we still called them Indians and his dark good looks had more than a few girls sighing when he'd walked by. Steve also was a good friend of my older brother and he drove an old Model A Ford. Our driveway was often full of vintage cars and the male members of the cast of ‘American Graffiti’---the rebel, the nerd, the solid citizen, the king of the road and other assorted boys---many with tools in their hands as they worked on their prizes.

Cruising downtown after dark on the weekends, going to Rock and Roll record hops in the school gym, going to drive-in movies in the summers, cherry bombs found on laundry day in my brother’s pockets, walking to the malt shop every day after school, and hanging out at a drive-in restaurant with car hops on roller skates---It was a good era to grow up in. The characters played by Ron Howard, Cindy Williams, Richard Dryfuss, Harrison Ford, and Mackenzie Phillips would have fit right into my youth.

I even saw a live performance called The Big Beat Show starring: Jerry Lee Lewis (Whole Lotta Skakin’ Goin’ On), Buddy Holly and the Crickets (That Will be the Day), Chuck Berry (Johnny B. Goode), Frankie Lymon (Why do Fools Fall in Love), The Chantels (doo wop singers of Maybe), Dickie Doo & The Don’ts (Tear Drops Will Fall), Screamin’ Jay Hawkins (I Put a Spell on You), and The Diamonds (The Stroll). I saw all these people on one glorious, fun filled night! In my diary, I had written: “That’s one show I’ll never forget. Boy, can those colored guys ever dance!” But I let the Young Me down. I don’t remember that show without the queuing of my diary description. I don’t remember that the curtains came down several times to get the kids to go back to their seats before the show would go on.

Young Me gasps in disgust upon hearing this. “Hey,” I tell her, “I’ve only got so much room in my skull for memories. I can’t keep them all!”

“But Jerry Lee Lewis?” the kid whines, “Buddy Holly, Chuck Berry?”

“Let’s talk about Steve,” I say. That’s her favorite topic, so I know that will distract her.

Steve was a personality plus kind of guy---outgoing, talkative, and funny. He’d often come by my locker at school, and would talk with me at dances and games. I had a five alarm fire going in my heart every time he’d come near. He loved messing up my hair, kissing me on my cheek or forehead---generally tease my hormones---then he'd would walk away laughing. Old Me thinks this is hilarious and believes he probably knew exactly what he was doing to my glands. Steve and I talked often over my high school years. We even double dated when I was with other friends of my brothers. Steve and I were two puppies playing in the yard, but inside I was the kid sister type with a burning crush.

In the earlier years, though, when ever he’d leave our house (after visiting my brother) he’d ask me if I was old enough yet to kiss him good night. Just after I turned fifteen one time I said, “Yes.” God, I thought I would die---according to Young Me’s words in our diary---when he put his arms around me and he was lowering his mouth towards mine. That’s when my brother piped up, “Watch out, she’ll bite you!” Steve laughed and said, “No, she won’t.” But, just as his lips touched mine, our dog bite down on his ankle.

Now, I’m frantically reading the next pages of the diary trying to find out if I ever got another shot at kissing my favorite teenage crush. Yup, I’m enjoying my vacation from reality when I hear Young Me singing: “You come on like a dream, peaches and cream, Lips like strawberry wine, you’re sixteen---I mean, fifteen, you’re beautiful and you’re mind.”

“Oh, cut that out!” Old Me says, “Steve didn’t sing that to you and you know it!”

“Did so!”

“Did not.”

“Did so!”

“Not!”

“I was there, and I say he did!”

”I was there, too, and I think you’re telling a fib. Besides,” I said with authority, “Johnny Burnette didn’t write that song until next year.” We both look at each other---Old Me and Young Me---with dawning in our eyes as we dive for the next volume of our diaries to look up our sixteenth birthday.

Jean Riva ©

Painting by: William-Adopphe Bouguereau 1885

A Typical Day on the Planet Aphasia

We got a late start this morning and it was well after noon before I sent my husband, Don, off to get started on his shower. An hour later I went to check on what was taking him so long to get his pre-shower routine out of the way and I found him sitting in his wheelchair in front of the TV in bedroom, absorbed in a soap opera. He hadn’t even begun the process yet!

Being the sweet, understanding wifey poo that I am---a woman who is in full command of the entire English language---I said, “What are you doing? It’s going to be fucking dark by the time we get to the grocery store!”

Don pointed to his favorite shrink from the Bold and the Beautiful soap opera whose beautiful face was filling up the TV screen. Taylor was the Friday cliff hanger. No wonder he couldn’t leave the show, he’s had a crush on her for three years. But I had his attention now and he proved it by wrapping his language disorder, aphasia, around a few of the words from the sentence I had just said. Yes, you can guess which words, but that wicked bitch Aphasia, she was messing with his head and the words came out as “sucking bark” instead of “fucking dark.”

I hung my head in shame. I knew what was coming and twenty lashes couldn't make me queue him to the proper pronunciation of my crude language. Sure enough, for the next hour I was treated to the ‘Sucking Bark Opera,’ sang at the top of Don’s lungs. The man only has a daily vocabulary of twenty-five words but he can sing one and two word “operas” just fine and dandy. When you’re not busy hating Aphasia, you’ve got to love her sense of humor. There’s a certain kind of poetic justice in the fact I should have an hour long reminder that I have to quit swearing. Aphasia, she took Don’s ability to talk factory profanity away from him and gave it to me. Now you know why I call her a wicked bitch.

Before cruising the aisles at the grocery store, I asked Don to watch my purse and our jackets in the shopping cart outside of the restroom door. He agreed. I did my thing and came out to find the cart deserted and Don twenty feet way. His back was to the cart and he was pointing to the label on the back of a woman’s jeans and she was saying, “You like my Levi’s?”

“Yes, yes,” he answered back. Don misses wearing Levi’s. They aren’t wheelchair or independent dressing compatible but he never misses an opportunity to point out a Levi label on the back of a woman’s butt. Guys in wheelchairs can get away with things like that.

“Don,” I teased, coming up behind him with the cart, “thanks for keeping an eye on my purse.”

He didn’t miss a beat. He pointed to the woman and said, “She.”

“She was watching the cart?”

“Yes!” he said with a wide-eyed innocent look of a little boy.

The woman winked at Don and agreed. He makes friends and finds co-conspirators every where.

I left the front area of the grocery store as Don was rolling off to the little bank at the front to collect some free pop corn and to get coffee at the Starbucks concession next door. My mini-vacation from the Planet Aphasia was about to begin. I was off to find the Red Baron.

Jean Riva ©

painting: Henri de Toulouse-Lautrec

Funeral Crashing, Aphasia Style

My husband, Don, is an obituary clipper. It’s not a hobby that he picked up since becoming a ‘certain age’ like most people would assume of old people who have a box full of newspaper announcements of this sort. He’s been doing this for at least thirty-five years. Don has a memory like an elephant and he also knew a lot of people, so his collection of clippings was huge at the time of his massive stroke when the collection got thrown out with our move to a wheelchair accessible house. When his ability to read returned, several years later, back came the obituary clipper part of his personality.

In Don’s distance past he worked at a funeral home as an after school job while he was in high school. He did various things like take the hearse to the hospital to pick up bodies, put flags on cars on funeral days and wash black vehicles. They liked him so much that they wanted to pay his way into undertaking school but he wasn’t buying that as a career choice. The experience did give my husband a special reverence for the importance of funerals and he never looked for excuses not to go to one. In Don’s book, it’s a duty to honor the dead and comfort the living and he’s not about to close that book now that he uses a wheelchair and can’t talk due to his severe stroke related language disorders, aphasia and apraxia.

In the past, of course, there were many funerals that he went to that I didn’t have to attend because I had no history with the dearly departed. I don’t have that privilege any more and Friday was such an occasion. Don had a clipping and the funeral was to be held at the mortuary where he had once worked. A double header, I presumed on the Planet Aphasia. The name of the dead guy sounded vaguely familiar to me but no matter how hard I tried, I couldn’t get it out Don how he knew the gentlemen. Oh, but he was animate! This was a funeral where just sending a card would not do. He was going---no ifs, ands or buts about it. Don’s aphasic brain couldn’t say the words: “If you won’t drive me, I’m taking my wheelchair all the way into town” but the determined look on his face sure got that message across. So, off we go in our somber clothing. We’re there doing our funeral thing. Greeting people who spoke to us, signing the guest book and still I couldn’t figure out where this dead guy fit into Don’s life. People would ask us how we knew the guy but, of course, neither Don nor I could tell them. I was doing my standard he-can’t-talk-and-I-don’t-know routine and feeling like I’d like to melt into the floor boards when Don finally got out the word, “Four.” So we started doing the aphasic polka.

“Four that---months, years, days, hours, seconds, people, places, or things?” I asked.

“Years!” Don beamed like that’s going to tell me the entire story. He was so proud of himself for getting out that clue to the mystery. Four years. Okay. We started the aphasic polka all over again.

 To make a long story short, just as we were getting seated so the service could begin my aphasia decoder ring finally broke the code. The only person Don knew in the dead dude's family was only four years old the last time he saw him, and that was way back when Don was in high school, working at that funeral home forty-seven years! Don occasionally kept the four year old busy at the funeral home when his parents visited the undertaker. So I’m sitting there in one of those little wooden chairs that are always too close together for comfort, listening to a bad version of “Precious Memories” and trying my best not to laugh up a cow on the spot. It was not easy, let me tell you. Even a few people near-by who had over heard our aphasic polka exchange were cracking up.

After the service, we didn’t stay for cake and coffee although I’m sure Don would have liked to have done so---there are no strangers in his world. And thus ended another wonderful experience on the Planet Aphasia where every day brings something new to laugh about. We have now officially crashed the funeral of an almost total stranger.

Jean Riva ©

Old Farts

As many baby boomers do, I’ve needed total knee replacements for several years, but I’m scared to death I’ll have a stroke if I do. The doctor says my best chance for not having one would be to lose some weight. But guess what, folks, I still don’t look like Twiggy. So what, I tell myself, if my bones are grinding bone against bone. And so what if I have this ghastly vision that in a couple of years I’ll be ten inches shorter and the skin on my legs will be bagging in folds at my ankles and I'll look like I’m wearing flesh colored gaiters. My brain will still be intact and my husband, Don, and I won’t have to share a room at the nursing home while the dog goes off to a shelter. Whenever this scary thought passes through my mind, I look around the kitchen wishing the fairy godmother of brownies has left some that I can stuff in the biggest hole in my face.

Seriously, thought, there are days when the pain is about to fry my senses and I want to shove Don---a stroke survivor---out of his wheelchair and scream, “Get up so I can sit down!" But I keep that thought to myself because I’m not Kathy Bates in Steven Spielberg’s movie Misery. No, I’m a good little caregiver-slash-wife and we caregivers-slash-wives know what that means. We bottle it up and button it down and keep our feelings and fears to our selves until the pressure builds up too much. That’s then we yell something like: “Do you have to leave your dirty socks on the floor!?” Why do we women do that, not share with our mates what's really poking pins in our butts and making us grumpy?

I’ll be the first to admit it. One of the reasons I don't want to get my knees replaced is because overweight old people don’t look good naked. We’ve got bulges and things that look better draped in clothing. It’s not just the extra pounds but at a certain age we start growing things: warts and moles and bumps of unknown origin.

So instead of getting my knees over hauled I keep pretending and telling everyone who will listen that I’m older than I really am. If I were eighty, for example, it would be acceptable to spend guilt-free hours sitting at my computer or lusting over the new varieties of sweet peas in the Park’s Seed Catalog. No one ever told me that housewifely things required so much walking around. Vacuuming and dusting and cooking, who cares! If I were eighty, I could eat dill pickles for breakfast.

Growing older and imperfect makes you feel like you’re also growing invisible. I could walk into a bank in broad daylight, rob it and no one but the security camera could describe me. I hate feeling invisible. Even worse is being noticed and treated like my brain is operating on only two of eight its cylinders. “Here’s your change, dear. Can you find your car in the parking lot?” Elvis may have left the building, but I still have all the bats in my belfry. Thank you, very much.

Our concept of age is a curious thing. For many months after Don turned fifty, he had a glorious time telling everyone he was sixty so that he could then hear them say, “You look so young for your age!” It was a joke he played on waitresses, to ask them for their senior citizen discounts only to be turned down while feeding his ego. Then one day we went to a state park and when attendant in the booth told him it would be $10.00 to go to the beach. Don replied, “Does that included the senior’s discount?” thinking he’d get this young girl to pay him a compliment. But she didn’t. She looked him straight in the eye and said, “Sorry. That will be $5.00 then.” Don got an expression on his face like a young cat that just caught his first mouse and he didn’t know quite what to do with it. It was the last time he ever asked for a senior discount.

What is it that William Faulkner said? “The past is not dead. It is not even past.” What did he mean? That we cannot escape our past? It’s true, you know. Our lessons learned and favorite pranks are always with us, tucked away like souvenirs carefully glued down in scrapbooks. I’m telling this to all the young people I know so that one day when they visit me, old and sitting in a wheelchair, they won’t assume that the smile on my face is from passing gas. The smile, I want them to know, could be because I'm playing in my memory garden and dreaming of the days before I started wearing flesh colored gaiters.

Jean Riva ©

Painting: Egon Schiele

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Life is Perfect, Even When it's Not

This is a blog entry from a few years back that I had at a different site, but it fails to open half the time so I'm relocating it here.

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At the dentist office today, I took my wheelchair bound husband, Don, to the restroom. It’s a good one with grab bars situated so that he---with my help---can stand up to pee. But first we had to get him out of his coat. Its nylon and is so slippery it would be like holding on to slime, should I have to catch him in a fall. That task accomplished, I got Don’s pants down and held his shirt out of the way while both of us stood side by side waiting for the flow to start. It didn’t. So, I’m singing game show tunes in my head---the kind they play while a contestant is trying to come up with an answer while the clock ticks away. For some reason the wait seemed longer than usual which made me think of our friend who has a ‘shy bladder.’ He can’t pee if someone else is in the room.

“Ron better hope,” I said to Don, “that he never needs help peeing.” Don got the humor in that statement which gave us both the giggles. We were giggling and laughing so hard by the time the pee stream hit the bowl, it’s a wonder it found its mark and didn’t cover our shoes instead. The restroom is just a few feet from the receptionist’s desk and heaven knows what she was thought we were doing in there. The look on her face when we came out was priceless. She wanted to ask. Oh boy, did she want to ask but her phoo-phoo manners wouldn’t let her.

As I sat in the waiting room while Don got his teeth cleaned, I picked up an old copy of Real Simple magazine. On the first page I turned to was a Ralph Lauren double-page layout for Polo Black, a men’s fragrance that featured a hot model. And I do mean sexy as in take-off-your-clothes-and-let-me-see-the-rest-of-you sexy! I looked at him, and then around the room trying to figure out if the Thought Police was present. I decided that a dentist’s waiting room was not a good place to have a virtual organism, so I quick turned the page. Thanks goodness, the next page was a double-page layout for a Chevy. Cool. Keep those cars a selling, we need their pension money. I flipped through a few more pages and came to an ad for Starbucks coffee liqueur which was exactly what I needed after lusting after the Ralph Lauren guy. I’ve never smoked but that guy had me reaching into my purse for a pack of cigarettes.

By now I was beginning to think that the Real Simple magazine was nothing but advertisements. Duh, aren’t most of them? And sure enough, the next page was a double-page layout for American Express featuring Ellen DeGeneres. She says in the ad that her life is perfect, even when it’s not. Wow, what a nice thing to be able to say about your life! I think I actually know what she means.

Finally, I came across a few articles in the magazine. ‘What’s the Craziest Thing you ever did for Love?’ was the title of one article, and there were some notable answers like: “take skydiving lesson,” “move into a log cabin built in the 1800,” and “eloped 36 days after meeting someone.” Another article was titled, ‘Portrait of a Family.’ There is humor in this, I thought about finding these two articles, because my family portrait and the craziest thing I ever did for love could be one and the same. Yup, I’m getting out the oils and easel and painting a portrait of Don and myself. We’ll be standing side by side, leaning over a toilet bowl, expectantly looking down and hoping that neither one of us ends up with pee our shoes. Love doesn’t get much crazier than that, does it?

Jean Riva ©

Postcard: Park Kiss, circa 1900
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Where, Oh, Where is the Fun?

(Read with tongue-in-cheek)

Caregiving sucks, you know. Being a housewife sucks. Don’t try to talk me out of it! Don’t try to tell me I’m an angel or a saint---or worse, yet, “A good woman.” Don’t say, “That’s okay, dear, tomorrow your PMS will be better.” Don’t tell me about the silver lining after the storm. And don’t mention the fable about caregivers being given no more than they can handle. I know all that stuff. I was around when they invented that spin. What I don’t know---and maybe you can enlighten me---is when do we get to have some fun? When do we caregivers get to push all the pill bottles aside, forget the daily therapies, hang up the pots and pans, let the dust bunnies mate, and say, “Enough already! I’m going sky diving!” Well, maybe not sky diving. I’m afraid of getting on step-ladders. I’m old and I forget my calcium supplements too often to test the god of broken hips.

Okay, so what DO old people do to have fun? Let’s see. Don does a version of park bench sitting. You know about that, don’t you? Old guys sitting around pretending to play checkers but they're actually doing stuff like watching young people go about their mating rituals, yuppie business men with their brief cases in one hand and cappuccinos in the other, and little kids doing what little kids do best. Bench sitters have a lot of fun. Every so often they get to say to themselves, “Been there, done that.” They might even get to laugh when a yuppie steps in gum or a little kid's ball lands in a pond. Old men get to flirt, too. Like making a pharmacist turn three shades of red by telling her she's cute. My husband has fun doing that. Old men can come off sweet---most times---when they tease the girls and make them blush. But let an old lady try that. Bells would go off. A voice-over would come down from the clouds saying, “Step away from the hunk! You’re scaring him!”

I could knit, sew or quilt for excitement. Whoopee. Been there, done that. I could spit-shine the house. Been there, done that. I could learn to cook---you’ve got to be kidding! This old lady would find that torture. I've avoided it all these years. Why start now? I could buy some new make up and learn how to paint my face. Rudy red lips, black eyebrow pencil lines that over-shoots its mark, round circles of bright rouge plus mascara that runs down the cheeks. I’ve seen that look on other old ladies and I figure it must fun to play with your face that way. But face painting wouldn't be exciting like sky diving or roller derby or dancing under the moon. Or maybe I could pack my husband in the car and drive around until I get lost. Getting lost at my age IS thrill seeking because if you get caught doing that too often they test you for senility.

It's time to get back to my housewife and caregivers duties. The pills don't put up themselves. Laundry baskets aren't self-cleaning and if I don't let the dog out soon he's going to pee on the floor.

Jean Riva ©

Painting by Franz Von Stuck

Fess Up, Anyone for Gluttony or Greed?

Lest you think I never write anything except stroke and speech related stuff, I'm going to share a tongue-in-cheek look at two of the Seven Deadly Sins that I wrote for Associated Content. Yes, it's slightly irreverent but what else would you expect from a senior citizen with too much time on her hands?

But if you really want to read something stroke related, Cooper (our dog) blogged about Don's stroke in his entry titled, Daddy's Little Service Dog. Click here.


GLUTTONY AND GREED

I've already written about lust in the first of this four part series, so I might as well tackle the other two of the Seven Deadly Sins that fall in the category of excessive love of earthly pleasures: Greed and Gluttony. If Dante could lump the sins of lust, greed and gluttony together in 'Purgatorio' I can, too. After all, without Dante to rank the sins would we even have---on second thought, let's not go there! I don't want the natives to get restless here.

We all know something about greed. Or we think it's about amassing money or worldly goods and hoarding it all for ourselves. Literally speaking this is true, I guess, but how much is too much? Who decides when we've got enough Ding Dongs and dollars in our cupboards to ward off future catastrophic events? Greed, as in one of the Seven Deadly Sins, only makes sense when we hold it up against The Virtue in which that sin offends. Here, that virtue is Generosity.

Okay, so sharing is good. I think I read that in a book titled, 'All I Really Need to Know I Learned in Kindergarten.' So in theory if we share our Ding Dongs with the cat and..... Click here to read the entire article.

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Plumbing 101: Aphasia Style

We hear about the stroke survivors who have anger issues when dealing with speech problems, but we don’t often hear about the caregiver/spouses with anger issues.Well, I have them in this household. Not often, but once in a while the angry out-bursts come out of me from seemingly no where and when I least expect them. It feels like menopause all over again.

Last night I was working on the computer when Don wanted me to come in the bathroom. Right Now! Major important! Emergency! Everything is an emergency on the Planet Aphasia.

"Okay, the toilet is temperamental," I was thinking on my into the bathroom, "and it’s either plugged up or the chain to the flipper do-hickie is off its ring again." But after a short examination, I found out that both of these things were just fine. No real or semi-real emergency. No visible problem.

Don pointed down to the turn off valve that goes to the toilet tank. Then he gestured with his hand in a turning pattern and said, “Eeekkkk!”

“Don,” I answered, “The water IS turned on.”

“Eeeekkk,” he repeated.

So dutiful wife that I am, I turned the valve off, then flushed the toilet to demonstrate that the toilet tank will not fill up when the water is turned off. “Is this what you want?” I asked. “Why do you want the water off?”

“Eeeekkk,” he repeated more forcibility and with another hand gesture that was rotating in the opposite direction. “EEEEeeeeKKKKK!”

So dutiful wife that I am, I turned the water on again. Then I ran my fingers all around the valve and reported that it wasn’t leaking. “Did you see a leak?” I asked. I got the rotating hand gestures and sound effects again for an answer.

For the next fifteen minutes the valve went on and off a million times and the toilet was flushed repeatedly. And all I could get out of Don in the way of an explanation was that sound effect that was starting to grate on my nerves like fingernails on a blackboard. (And, boy, does that saying date me!)

It was at that point that Shrew-Lady took over my body and she started yelling that she’s going to sell the house. She hates toilets, and she hates plumbing problems. She threw in a few swear words and her tantrum was starting to make my blood pressure rise. Recognizing that out-out-control feeling, I knew that Shrew-Lady needed to leave. So I grabbed her by the arm and we marched out of the room. I threw my head back over my shoulder and told Don, “I don’t want to see you or hear you for half hour. I’ll be in the time out chair!” My sense of humor was coming back.

A half hour passed and like clock work, Don and his wheelchair came rolling up beside me and he said, “EeeeeeeKKKKK” with a hand gesture rotating one way, and then he did a short rotation of his hand in the opposite direction. “Eeekk.”

My aphasia decoder ring FINALLY broke the damn code. “You want me to turn the valve on full force then you want me to back it down a couple of turns.”

“YES!” Then the kissy-face stuff started in as Don plastered kisses on my face and hair. It was his way of telling me that I finally figured out what was so all-consuming, damned important for him to tell me.

“Don,” I said with a deep sigh, “You forgot who my dad was. I already know that about water valves.”

“Oh,” says, and rolled away laughing.

Such is our life on the Planet Aphasia.

Jean Riva ©
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Third Friday

We went to the fish fry at the old people's club today and as I looked around it occurred to me that the coffee waitresses were living in an episode of The Golden Girls, an old TV sit-com. The whole place was sit-com material. Three-hundred-and-fifty people lined up like pigs at a feeding trough or waiting in line to pay a ridiculously low price for all-you-can-eat. I mean, what's the story behind why a bald guy standing in line was wearing rubber boots up to his arm pits in Michigan's February snows? And why doesn't a woman 80-something know by now that Bermuda shorts aren't appropriate attire for days when the winter wind is strong enough to tip cows over in the fields? And who let the young guy in who was wearing a jacket with a big bat on the front and the bloody letters "VA" on the back? And why aren't I smart enough to stay inside on a day like this? It's not as if Don's wheelchair is fitted with studded snow chains.

I've written about 'the club' before in an article published at Associated Content. That was last year before I learned about 'keyword density' and making things search engine compatible so consequently that article doesn't get much traffic. Even so, it's still one of my all-time favorite pieces of content. It touches on aphasia and the loneliness it brings plus it's laced with happy memories from more carefree days before the stroke, and people have said it has some funny moments. If you haven't read Table Talk yet I hope you'll click here because that article is getting cob webs on it, sitting back in the archives of unread AC material.

Jean Riva ©

Painting: The Debauchery of Prince Regent by James Gillray

Exciting News

I just found out that one of my aphasia caregiver articles has been nominated for the Best Text Article of 2007 on Associated Content! It's caregiver humor piece and I really needed this exciting news right now. The site publishes thousands of articles and I don't know how much of a chance I have of winning, but it doesn't matter. The nomination feels great, especially now. If you want to read it you can find it by looking in the right hand column (under 'Have you Read...'). Look for, The Shower Stall Mystery.