September 14, 2014

Welcome to The Planet Aphasia!

The posts added to this blog in 2014 are out of order from those posted in earlier years. They were transferred here from a now-defunct site because I wanted to preserve the documentation of my husband's and my funnier experiences in the world of dealing with his aphasia, apraxia and agraphia. The rest of the blog is still a documentation of our lives in the post-stroke years but they were written diary style, as things were happening and those posts are a mixture of what you'd expect with a couple dealing with the loss of language---the ups and downs, the rants, heartbreaks, triumphs, humor, and sadiness. My husband has since passed away after living with severe language disorders and right-side paralysis for twelve years. He was an amazing man, the way he played the hand that was dealt him. I learned a lot over those twelve years and I shared it all here in this blog.....

If you want to start at the beginning of our journey and work your way forward, the first post I wrote for this blog can be found here: Sight-Day at the Disability Deer Hunting Camp

July 16, 2014

He's in the Dog House Now!

The atmosphere here on the Planet Aphasia is warping my waffles. Don't ask me what that means. If your waffles are warped too, you'll understand. If not, trust me when I say that it's not a good thing here in the city of Caregiverville.

Every year there are eighty thousand new cases of the language disorder, aphasia, and I get a singer. Headline: Giddy Little Husband Tools Around In His Wheelchair Greeting His Day Like He's Been Over-Dosing On His Celexia Again.

"Happy birthday to you, happy birthday to you," my husband, Don, belted out like he was determined to be heard on the moon.

The problem is no one was having a birthday. The song is one of two that Don's aphasic brain can sing using actual lyrics. Well, sort of---the words often come out like they went through a blender first.

I should be happy for lyrics. Any lyrics. After all, Don has so few words in his vocabulary since his stroke. But these two songs are different. They're ones my husband learned when he was still using a highchair and they're stored in a relatively undamaged part of his brain. Even so, hearing "happy birthday" was a pleasure this morning---for the first hour. In the second hour, sweet little wifey poo that I am, I politely requested that he switch to his other song.

"Jesus likes me. Yo, you know," he complied. Okay, so he's got work to do on that childhood favorite before he's ready for American Idol.

"Yo," I interrupted Don, "Jesus likes me? I think he loved you when you were a kid."

This afternoon we were coming back from running errands and no one had yet found the switch on the back of Don's head to turn him off and he was getting annoying. Back up here---I'll admit that I was more than annoyed. I'd reached my quota of being a Nice Nancy about the never ending, loop of songs.

I pulled over to the side of the road and told him to get out if he couldn't behave himself. Hey, it worked on my brother and me when we were kids so I figured why not give it a try. And for a split second I thought that I really could do that, shove Don and his songs out the door and drive off. How much trouble could a person get into for leaving a wheelchair bound guy sitting at the side of a country road, singing "Yo, Jesus?"

When I shifted the car into park, Don looked at me as if---well, as if I'd warped my waffles for good this time, permanently indenting brain matter that isn't suppose to be marked with such a precise pattern of man-made deformities.

"I mean it," I practically shouted, trying to sound mean and bitchy. "Get out or get quiet!" If I were inclined to be honest here I'd admit that it wasn't much of a stretch for me to be the perfect bitch. Four hours of "Jesus has a birthday" or whatever it was that Don was singing at the top of his happy little lungs was doing a number on my head.

My husband took in my angry words and gave me an angelic smile, his blue eyes smoldering with mischievousness and after a very---and I do mean very---long pregnant, aphasia driven pause he said, "Change lanes."

I stared at Don for a full minute. I couldn't have been more astonished if he'd just used ruby red fingernail polish for eye liner and I wanted to bang my head on the steering wheel. (Now you know how waffles get warped in Caregiverville.) It's been five years, ten months and seven days that I've been trying to teach Don to say "change lanes" and "turn here" when we're in the car and he's frantically trying to get me to do one or the other. And the gods of Aphasia, bless their wicked asses, picked that time to let the words come down the pike and out his mouth.

"Okay, buddy-boy," I said with recessing gruffness as my bitch persona made her exit and I shifted the Blazer back in gear. "I'll change lanes and we'll go home. Together. But don't you forget that you're in the dog house now!" ©

By Jean Riva

This article appeared at Yahoo Contributors but they are going out of business and the rights to publishing it reverted back to me. So I've moved it and others this month to my blog to preserve them. If they seem out of order to the rest of the content in this blog, that is the reason. 

Baby Gates or How Not to Help an Old Lady in a Parking Lot

The scariest phrase in the English language, according to the dog, is 'baby gate.' He's on a diet so those words come up often in our conversations. All I have to do is say 'baby gate' and he goes off running with his tail between his legs, his little toenails clicking on the linoleum. Since I started working on the internet, the dog has gained three of his nineteen pounds. A lot of people can't see the direct correlation between my website job and Cooper's gain weight, but it's actually quite easy to explain. The dog thinks my computer wardrobe is an ATM machine that dispenses Pup-Peroni treats. The more time I spend dripping assorted liquids on my keyboard and sneezing on the monitor, the more opportunities for our pudgy poodle to make Pup-Peroni withdrawals.

I thought about this the other day when a Helpful-Henry type guy approached me in the parking lot wanting to help me load my husband's wheelchair into the back of our Blazer. Usually when this happens---and it happens frequently---I'll just say, "I appreciate the offer but we have a lift" and the nice guy will fade off into the sunset. Sometimes a Helpful-Henry---we'll call him the Model 'A'---will stay around to watch because: 1) he's never seen a Bruno wheelchair lift, or 2) he's lonely and this is a senior citizen's version of a pickup bar. This model of Helpful-Henrys will poke around the control box and tell me about his aunt Tillie's wheelchair, maybe ask a few predictable questions. Well, if you knew me, you'd know I don't give a tinker's damn about a stranger's Aunt Tillie's chair but I got a B+ in small talk at college and I want to keep up the skill. So, I listen and smile and try to decide if he really does have an Aunt Tillie or does this Model 'A' just want to split a Metamucil malt with me over at the Senior Citizen Hall.

If the Helpful-Henry is too young to remember seeing "Rock Around the Clock." the first time it made the rounds in the movie theaters, then my mind doesn't blow smoke and fool itself into thinking that this guy is Sir Galahad and I'm the hot---although slightly wrinkled---babe in the parking lot that he's come to save from a hernia. No, I don't get the vapors over the Helpful-Henry Model 'B's and forget that I have husband patiently waiting inside the car. I don't turn my face away and quickly pitch some color in my cheeks or wish I hadn't left my support hose at home in the drawer. These young pups are sweet, and if I had an unmarried granddaughter I'd probably invite a few of them over for Sunday dinner. Assuming they liked Chinese and I could do take-out.

Then we have the overly eager, Helpful-Henrys. The Model 'C'. They come in all sizes and ages, all colors and shapes. They are lurking every where and they exasperate me! They drive me crazy! I admit, the trip to Loonyville wouldn't take long but I don't need any help getting there. Thank you very much. The Model 'C' refuses to take "no" for an answer. He ignores the chair lift and flings the wheelchair into the back of the Blazer without waiting for me to make sure that its T-shaped docking arm is positioned right-side-up so that I can use the lift to get the chair back out of the car when I get home. How do I explain that I don't keep another Helpful-Henry at home in the garage, standing at attention next to the recylcing bins? I don't explain. Model 'C' doesn't give me the time! So, I just smile that grateful old lady smile and let him think he's the best Boy Scout on the block. But at times like that I wish the phrase 'baby gate' was universally accepted as the scariest phrase on earth. Just once I'd like to hear the pitter-patter of a Model 'C's shoes running away as I scream "baby gate!" in the parking lot in front of Lowe's. ©

MacArthur Park: Lamenting the Loss of Language

"MacArthur's Park is melting in the dark
All the sweet, green icing flowing down...
Someone left the cake out in the rain
I don't think that I can take it
'cause it took so long to bake it
And I'll never have that recipe again
Oh, no!"

I could throttle that guy---Jimmy Webb----who wrote those lyrics. I've spent so much time in my life trying to solve the mystery of 'who left the cake out in the rain' that I've about worn out my Dick Tracy badge and Nancy Drew books looking for clues. Why did they take a cake to the park in the first place? Was it an innocent sweetness for a picnic or a hippie generation, drug-laced concoction? Was the cake a metaphor for crushed love? Did the song writer make a bet with a friend; a hit song about a cake, no problem! Was the song about the Vietnam War and the green frosting meant to be the causalities suffered by our soldiers? Did Jimmy compose that song in a music composition class, like the rumors say, or were the lyrics written in a blur of drugs and alcohol with no meaning what so ever? I want that song dumbed down for me, so I can quit worrying about the damned cake in the park!

Puzzling out the mysteries of MacArthur Park was actually good training for living with my husband's language disorders, aphasia and apraxia. If I hadn't pondered the cake in the rain every time I've heard that song played, would my brain be able to get around something like understanding that "butt fold" translates to "button my shirt?" Would I comprehend that "want piece" is not a request for sex but a man seeking help putting on his shoe? Without MacArthur Park would I know that "Sha-ming!" means Don is doing his happy dance? My hippie era---my search for truth in language---everything in life comes back around again like horses on a carousel. Being a speech affect stroke survivor is like starring in a silent movie and I, the spouse of one, am the organ player sitting in the darkened theater struggling to keep up with the action on the screen.

A synonym, a single word standing in the darkness of a cave with not one candle to aid as it searches for a way outside and onto my husband's lips. A metaphor, a monster in a cage grabbing for the cake just outside its reach. We search for clues in our pasts---like that cake left out in the rain. Nothing makes sense. Nothing seems fair. And Don is desperately trying to hold on to something that is flowing down like green frosting in the rain. "I don't think that I can take it, 'Cause it took so long to bake it"---a lifetime of building speech. But Don and I do still have the recipe. It's in my Aphasia Decoder ring, our shared history. Our walks in the park that allows me to translate many of the thoughts stuck inside his aphasic brain.

My heart mourns for the stroke survivors who are too afraid to wade into Frustration Lake and find their own lost decoder rings sitting at the bottom, in the murky water. My heart mourns for the loss of easy communication. A million people! A million people walking around with their words stuck in the Cave of Aphasia, their ears pressed up against the wall listening for their rescuers to break through the dark before their breath is gone.

I may never learn the true meaning of MacArthur Park. The myths about the song are so old and plentiful that they have become 'the truths' from having been repeated so many times. But if I do puzzle it out, I'll turn to solving another mystery that haunts me on those rare occasions when I'm in the car on the way to having fun: 'who let the dogs out?' ©

by Jean Riva

Jean's main passion in the writing world centers around educating the general population about stroke related language disorders, caregiver issues, widowhood and growing older---often using humor to do so.

July 15, 2014

The Fall: Dateline: Caregiver City, 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.

There is nothing else in a house that sounds like a body hitting the floor. I heard that kind of thud today and from the kitchen I took off towards the bedroom in an old lady version of a triathlon competitor---stiff knees, making my gait bob from side to side as a speed walked, then hopped over the dog and came to a sliding stop with my socks. My arm was raised in the air as if I was taking part in an Olympic Torch Relay. That's when I realized that I had a wooden spoon in my hand and I was about to drip pistachio pudding all over the place. I did a quick scan of my husband, Don, lying on his back doing an imitation of a beached whale at dawn. He wasn't dead or dying so I dashed back to the kitchen to turn off the stove and deposit the spoon back in the pudding pan. It would have been embarrassing to call an ambulance, the fire department and a carpet cleaner all in the same hour.

Back in the bedroom, Don didn't want me to call 911 to bring help getting him off the floor. "It's a free service included in our taxes," I pleaded. Still, he wasn't ready to give in to the fact that his wife is not a female version of Arnold Schwarzenegger in his prime. We needed help! I thought about all the books in our library and wondered if we had one titled, "An Idiot's Guide to Getting a Paralyzed Guy Back in His Wheelchair." Nope, but I put it on my mental shopping list. We did have a copy of a National Geographies magazine that has an article in it about rescuing beached whales. I briefly wondered if it would be of any help with the situation in the bedroom. Nope, pouring pails of water over Don while waiting for the tide to come in didn't make much sense in the middle of Michigan.

The first time my husband fell out of his chair I struggled, pushed and pulled and finally got Don to his knees. By then, I was wheezing louder than hippopotamus having an asthma attack. But I got his upper body flung over the bed and managed to hoist the rest of him up on the mattress and back to square one for making a transfer to his wheelchair. I don't usually talk about giving wedgies in polite company but it would be quite appropriate here as an explanation for how I managed this feat of getting my guy off the floor. The ordeal took more than an hour and by the time it was over we were both a mass of quivering, sweaty flesh. "Quivering, sweaty flesh" has its appeal when talking about sex but for a couple of old farts dealing with a help-I've-fallen-and-I-can't-get-up situation that phrase can only be filed in a folder labeled, YUCK!

Finally today my husband gave in to my begging and pleading. I called 911 and we waited. Don, he picked that time to point to a burned out light bulb in the ceiling fixture that he wanted me to change before the emergency vehicle roared up our street. Me, I was more concerned to see if the dog had dragged any dirty underwear into the living room. He did. He's a canine pervert.

Two EMT guys showed up at our door: one big and burly, the other wimpy and girlie. They dragged snow across the carpet and I thought, "Okay, if Don was dying I'd be glad they didn't take two seconds to shed their boots." It's a woman thing, I guess, to worry about cleaning details. In the bedroom, the guys snapped on their latex gloves and evaluated the situation before the burly guy righted Don into a sit, got behind him in a weight-lifter's squat and picked all 240 pounds of my husband up with one big He-Man grunt. I was impressed that he didn't split the seam on the back of his pants. Mr. Burly then asked Mr. Wimp to take me into the living room to help him write up some notes.

I sat in my lady-of-the-house chair naming off drugs and wondering why Mr. Wimp didn't take off his gloves. What kind of germs do you suppose he expected to pick up from his paper pad and pen? But I quickly got distracted from that thought and started worrying about what was going on in the bedroom. I'd warned the guys that Don has a language disorder and a very limited vocabulary but I forgot to mention that when he's tired he reverts back to answering, "Yes" to every question. I hoped Mr. Burly didn't ask about all the bruises on his paralyzed arm that are bi-products of taking a blood thinner.

"Did you wife do that to you?" I was worried Mr. Burly would ask.

"Yes," Don would cheerfully, but mistakenly, answer and I'd be in deep do-do. Getting interviewed by Protective Services is not very high on my list of 'A Hundred Things I Want to do Before I Die.'
Don must have passed Mr. Burly's test and he came rolling out of the bedroom with the guy following up the rear. The two EMT men exchanged a few words and it was clear they were ready to leave. That's when I knew Don that was back to his normal self. Out of his lips came his favorite word. "Garage?" he asked while pointing back and forth between Mr. Burly and Mr. Wimp.

I translated that in my head and spoke up quickly, "Don, these guys have other old people to pick up off the floor. They don't have time to tour your collectibles in garage."

"Please?" Don begged, using another word in his twenty-five word vocabulary. It didn't help. The guys were properly polite and promised to come back when they weren't on call. I was thinking how grateful I am that Don's pre-stroke hobby wasn't collecting x-rated magazines and sex toys. Every friend and stranger alike who crosses our threshold gets invited out to the garage.
I returned to the kitchen, found the abandoned pan of pistachio pudding and wondered if I could eat the whole thing in one blissful sitting. If you want to know the answer, it will cost you a quarter. ©

by Jean Riva

Table Talk: Caregiver City, Planet Aphasia

There's a line in a 1960s movie that is engraved somewhere in the space between my ears. In 'Two for the Road'---while eating a meal on the French Rivera---Audrey Hepburn asks Albert Finney: "What kinds of people sit at a table and don't talk to each other?" Then they both burst out laughing and say in unison, "Married people!"

Before my husband's stroke, Don and I never lacked for reasons to flap our jaws. But on rare occasions when we found ourselves not speaking at a table, that movie line would have a temper tantrum inside my head and demand an explanation. Sometimes our silence was from a deep, comfortable companionship like two sleeping puppies in a cardboard box. Other times the silence might have been part of a tiny tiff caused by something like a cap left off the toothpaste---I couldn't help that, I was abducted by a UFO! Or maybe we'd be sitting silent, both of us voyeuristically tuned into a dialogue between two space cadets at near by table.

I'm having trouble learning how to be old. I've got coupon clipping down pat, but I forget to take them to the store. I know about the two-for-one breakfast special at our favorite restaurant but when I haul Don out of bed to go, we show up on the wrong day. I know how to knit but that doesn't count, I've been doing it since I was a kid. I like cats, but I don't want to split cans of tuna with one on a daily basis. About the only rule in the 'Old People Handbook' that I've got mastered is the one about going to the Friday night fish fries.

The fish fries are held in a no-frills private club with a banquet room and kitchen, a bar, a couple of bowling lanes and pool tables. It's the only place in town where you're just as likely to see an Elvis impersonator for entertainment as you are a Polish polka band that has one member who missed one too many accordion lessons when he was kid, and the lady's auxiliary often sells chocolate cake that you can wash down with your beer. We don't drink but since the stroke Don likes this place because there's always a chance he'll run into someone from his distance past. He's out trolling for friends.

At the club, glasses thump on table tops. Silverware clinks against plates. Tongues are wagging. Lips are moving. People are laughing---all creating a din as people stuff white fish into the biggest hole in their faces. Three-hundred-and-fifty people lined up at tables like dairy cows at automated feeders, computer chips in their ear tags telling the machine how much cow chow to send down the shoot. "Hey, I need more fish over here!" a man shouts while I'm feeling as lonely as a Maytag repairman. What kinds of people sit at a table and don't talk to each other? People dealing with the stroke related language disorder, aphasia.

I shake that thought off like I'm a dog that fell in a river and I remember being in a momma poppa restaurant in North Dakota where they obviously didn't get many strangers. It was a no frills kind of place. Good food. Friendly people. Don wanted to order a piece of apple pie after his lunch and the waitress said, "I'm sorry, but we don't have any pie."

"Yes, you do," he pointed out, "It's right over there."
"I know it," the girl replied, "But if we sell it before five o'clock our night customers get mad."

Even after a bushel and a peck of macho-man flirting and turning the hands on his watch to five o'clock, that waitress wouldn't budge. Tourists just passing through didn't get dessert in that town where the waitresses undoubtedly all had cast iron rods holding up their resolves. God, we laughed about that. Back in those days, Don could usually sweet-talk the freckles off a girl's face, but he couldn't get a piece of pie in North Dakota.

We never traveled the major highways when we were on vacations and some of our best memories come from dinning in small towns. One time, in rural Iowa, we walked into a restaurant that got dead silent when we sat down. And for the next hour and a half we were the target of twenty voyeuristic people who sat silently, listening to our every word. Don, being full of himself and a gifted story teller before his stroke, made sure they got their money's worth as he spun a few of his well honed tales. What kinds of people sit at a table and don't talk to each other? Bored country folks who probably thought that we were Albert Finney and Audrey Hepburn on a road trip. ©

If you're feeling fancy free
Come wonder through the world with me.
And any place we chance to be,
Will be our rendezvous

Two for the road we'll travel down the years
Collecting precious memories,
Selecting souvenirs
And living life the way we please.

'Two for the Road' lyrics by Leslie Bricusse

July 14, 2014

Taming the Shrew, Caregiver Style

The dog needs his own alarm clock. I'm sick of fighting with him to see who gets to pee first in the mornings. My bathroom is at one end of the house and he needs to be at the other end and I can barely run fast enough to service us both. One of these days I'm going to pee my pants trying. If Cooper could just get himself up fifteen minutes before I do he could let himself out, trek around our deck, do his business then come in and lick us awake. It shouldn't be too hard for the dog to learn the door opening trick. We've got those handicapped levels (instead of door knobs) and he's a smart little bugger. Don, my husband, is no competition for pee time. He's right side paralyzed and pees in a urinal. Ah, the feeling of togetherness I get when Don and I pee at the same time! "The family that pees together stays together," I often tell him from the throne.

Some of the words that tumble out of my mouth---entirely of their own volition---shock even me. Like: "Don, do it yourself, I'm not your mother!" This shrew-lady comes to our house mostly after Don's showers when he wants me to pick out his clothing. We've got this great, wheelchair accessible closet with hangers down at his level and low hooks for his not-ready-to-send-to-the-cleaners wool shirts. And it's not like his choices are as hard as those on an SAT test; it's mostly wheelchair compatible sweat pants and tee-shirts. But every day it's the same old thing; he'll sit in the closet for a few minutes, then he'll bellow out "Jean!" or "Cooper!" which ever name his language disorder, aphasia, plops on his tongue.

If I'm in another part of the house I can't be entirely sure, from the frantic tone of his cry, if: 1) he's fallen and he can't get up, 2) there's a spider on the wall, 3) he can't decide what to wear, 4) I forgot to flush the toilet, or 5) the house is on fire. So, I come running at the sound of his voice as if it's a dinner bell at an Over-Eaters' Anonymous meeting and I'm the hungriest woman in the room.

Can someone tell my why this full-grown, macho guy developed a fear of itsy bitsy spiders since acquiring a wheelchair? It doesn't matter if they are butt-ugly and scary or cute like Daddy Long Legs from a Walt Disney movie. He sends me off on a hunt like I'm after a bull elephant in heat that's just torn down a primitive village. Glory hallelujah! With Kleenex in hand, I stalk the little beast and get my man! Shall we have him stuffed and mounted? Gone are the days, when I once made a big deal over giving a reprieve to a spider living in a corner. "Spider," I said with dramatic wave of my arm, "This is not your day to die." And I completely missed the possibility that it could be a female ready to lay eggs while it waited for the governor to call and give it another pardon. Oops.

Back standing in front of the closet, I have to decide: is this a Shrew-Lady day or did Miss. Manners stop by? I hate having two personalities! On Miss. Manners' days I might sweetly suggest, "Don, you've only got three colors of sweats. Let's pick one. Good choice! Now, let's see what color shirt will go with your pants"---straight out of the pages of "The Caregivers' Guide to Building Self-Esteem." It might be a coincidence, but I think Miss. Manners comes by on the days when we're in a hurry. On Shrew-Lady days, she makes Don pick out his own outfits, and then she bits her tongue when the color combinations look like they were selected by a blindfolded dart thrower.
Cooper, he's met Shrew-Lady too. That silly little pompous poodle has learned how to take short cuts underneath Don's wheelchair when he's blocking a doorway, but he couldn't figure out why Shrew-Lady got so upset when he snatched the top piece of bread off a sandwich and dropped it mustard side down on the carpet.

Not long ago, Miss. Manners decided that Shrew-Lady needed to chill out and get in touch with her softer side. So Miss. Manners sat Shrew-Lady down in a chair and told her that even before the stroke Don used to call and ask: "Jean, what should I wear?" Shrew-Lady, she might not be entirely tamed but now she tries to remember the words I've said to so many novice caregivers: "Not all things are stroke-related." Or to put it another way, all guys will be guys. ©

By Jean Riva

This article was first published by Yahoo Contributors, in their humor section, but they are going out of business and the publishing rights have reverted back to me. So I've moved it to my blog to preserve it. If it seems out of order to the rest of the content here, that's the reason. It was written before my husband passed away.

Bobsledding the Staircase Dateline: Caregiver City, Planet Aphasia

It snowed last night. Oh, goodie! That means we'll get company later today. Last time it snowed the little girls next door came over and we made a deal. They'll shovel our front side walk and I'll pay them. But negotiating the price was a bit hairy. Some where during our corporate meeting, Girl Number One said, "We don't care what you pay us. We just want to help old people."

I was brought up believing that you can't slap little kids silly, so I plastered a pleasant look on my face and said, "Oh, isn't the sweet." But in my head I was holding back my Pit-Bull Mama persona who wanted to lunge at the girl, take her down to the ground and make her take the word "old" out of her sentence. Where in the name of the seventh sun did that come from? For crying out loud, I haven't even gotten my first social security check yet!

We have this deck that wraps two sides of the house and I was embarrassed to ask Girl Number One and Girl Number Two to include shoveling it into their bid for my business. No one in Michigan shovels their decks but me. I keep ours cleared because we have three doors that open out to it and you never know when you might have to escape from an axe murderer in the middle of the night. In situations like that, who's got the time to put on your boots before going outside? I also have a fear of seeing a newspaper highline that reads: "Wheelchair Bound Man Trapped in House Fire - Wife Didn't Shovel the Deck." So, I huff and I puff and make the snow disappear each time Old Man Winter poops on our deck.

Another fear I have involves being on an upper floor of a building with only one elevator. I developed this fear after a surprise fire drill during one of my husband's speech classes. Like good little sheep, we people pushing wheelchairs did what we were told and parked our mates on the landing of the staircase, waiting for the fireman to remember that we were part of the drill. In theory, they're supposed to carry the needy and injured down the three flights of stairs. Ya, sure. Worry wart that I am I'm absolutely sure that the firemen who'd show up in a real fire would have fears of getting hernias and they'd pass on by with an excuse that they have to axe out some windows. I have trust issues with axe wielding men.

Of course, we all know that staying on the upper level of a burning building with our wheelchair bound mates is a choice. And I hope I'll never have the following conversation with Don, my husband:

"Stay!" He'd bark out as the flames got closer.

"You mean go?!" People with the language disorder, aphasia, often say the exact opposite from what they mean to say.

He'd give me a long, confused look before enlightenment dawned. "Go!" he'd correct himself.

"No," I'd refuse while looking longingly down the staircase, "Not without you."

"Stay!" he'd plead more urgently. "No---go!"

Me, I'm always looking for alternate options so I'd probably consider taking off my pants and making a make-shift sling that another spouse and I could use to carry our mates down the staircase. If that didn't work, we could always stand at the top of the stairs, close our eyes and on the count of three, two of us at a time could push the wheelchairs off the edge, and hope for the best---holy mackerel, we have winner! George made it all the way down to the bottom. But the most do-able idea would probably be to abandon the wheelchairs, roll our spouses flat on their backs and tell them to stiffen up and pretend they are bobsleds. One by one each spouse could push-start their mate-turned-bobsled, jump on and ride them down the staircase. That would give new meaning to the term "two man bobsled team."

After that fire drill, I never viewed the principle of having a single elevator in the building in quite the same way. What if it broke while we're upstairs and it happens on a day when my cell phone's battery goes on strike and the weekend is coming and the maintenance people have all gone home early? It makes me goosepimply just thinking about. Just in case that happens, before going upstairs to one of Don's speech classes I now check my purse: Left-over fortunate cookies from Sunday in case we get hungry. Check. Suck-able candy in case Don's sugar drops. Check. Fingernail file in case I get bored. Check. Tiny tins of preserves from Cracker Barrel in case we find a piece of bread in the trash. Check. Kleenex in case we run out of toilet paper in the bathroom. Check. After my mental inventory, I deem us ready to take the elevator upstairs.

The door bell rang a few minutes ago and I expected to see Girl Number One and Girl Number Two come to shovel our snow. Instead, two other kids came to collect can goods for the poor. I gave them corn and spaghetti and wished I hadn't forced myself to eat lima beans last night.

"Life is good," I told my husband as I closed the front door behind the do-gooder kids, "They came to collect for the poor instead of deliver." ©

by Jean Riva

 This article was first published by Yahoo Contributors, in their humor section, but they are going out of business and the publishing rights have reverted back to me. So if it seems out of order to the rest of the content here, that's the reason. It was written before my husband passed away.

July 13, 2014

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.

Universal Design: Building a Wheelchair Accessible Home

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.
For most of our adult lives my husband and I had wanted to build a house. It took his stroke for us to finally take the plunge. We really had no choice. The two houses that we owned were not good candidates to retrofit for Don's newly acquired needs and there were virtually no wheelchair accessible houses on the market.

Finding a builder who was knowledgeable about Universal Design in a town of 600,000 should have been easy---after all, the concept has been around since the 1980s---but it wasn't. The Home Builder's Association only listed one builder who specialized in that market niche and although his houses were beautiful, customized homes his starting price was twice what we had wanted to spend. But he was passionate about building for the disabled and even though he knew we couldn't afford his services he was generous with his time and he gave us the confidence we needed to go forward with our project.

All totaled, we called twelve well-known builders. Some had never heard of the term Universal Design. We were shocked! Other builders never returned our calls which, we believe, was a form of prejudge against the disabled. The building company we finally went with had built three wheelchair accessible houses, so they said, but we quickly found out that we had to bring our own research in to the design stage of the project. They were willing and able, but we were the experts when it came to Don's special needs.

Universal Design is not rocket science, but there is a wide variety of choices and decisions to be made. Just as every disability is different, every house for the disabled will be different based on the options taken and the budget you have to work within. The core, essential features of Universal

Design homes are:

* at least one no-step entry way
* one floor living (or a budget for an elevator or chair lift)
* 36" exterior and interior doorways
* thresholds on the doorways that are flush with the floor
* a roll-under sink in the bathroom
* reinforced bathroom walls around the toilet and tub for the grab bars
* four foot wide hallways
* a five foot open radius in the centers of the bathroom and kitchen
* a roll-in shower stall or transfer tub that fits the special needs of your disability

In additions to above requirements, there are many optional features that can be incorporated into home to make it easier for someone with a disability. A few optional features of Universal Design that we included through out our house were: 1) lever-style door handles; 2) lower windowsills than the norm, so that Don gets a better view from a seated position; 3) single lever faucet handles; and 4) the carpeted rooms have a very short looped carpet with a dense commercial grade padding underneath that is glued on both sides. (The wrong choice of carpeting and padding can make it difficult-to-impossible for wheelchair and walker users.)

In the kitchen, a side-by-side refrigerate is a must-have for people in wheelchairs. We also included two microwaves---one low for Don, one high for me. The cupboard below our kitchen sink opens up fully from the counter-top to the floor so that Don can get his wheelchair up under the sink. A section of our counter-top is also open underneath and lower so that Don has a work station in the kitchen. There are many Universal Design options available for a kitchen including hydrolytic cabinets that go up and down and oven doors that open from side to side but this is an area of planning that will quickly drive up the cost of your home. The few options that we did include in the kitchen fit our life style perfectly with a minimal impact on our budget. Through out the house all our light fixtures are the type that requires no ladder to change a light bulb. That can be done with a long handled bulb changing tool.

Our garage takes advantage of several common Universal Design features. The overhead doors are eight foot high, instead of the standard seven so that a pop-up van will fit. The garage is also large enough to unload a wheelchair from the side or the back of a van. We also have a parking space for an electric wheel chair with an outlet for the charger and a grab bar for transfers. Our electrical service box is in the garage instead of the standard basement placement. Another feature that is a favorite of Don's is that the entire garage floor is a gently slope.This eliminates the need for a wooden ramp. To push himself around in his manual chair, Don only has the use of one arm and one leg and with a conventional ramp he would not have been able to roam freely from the house to the garage without my help. Our front sidewalk uses the same gentle sloping principle, so there is no visible ramp advertising that a disabled person lives within.

Anyone who is thinking of building a Universal Design house will find building component for the disabled all over the internet. A few books and magazines of plans are also available. Your local rehab hospital may also put out a pamphlet; ours did, as did the local Home Builder's Association. Most helpful was our local Advocates for the Disabled office; they had a specialist in Universal Design, disabilities and local building codes who reviewed our plans free of charge and made suggestions.

He also gave us a scale model wheelchair to run around the blueprint to look for ways to fine tune things like the swing of the doors, furniture and outlet placements, turn spaces for the wheelchair, etc. This was a very useful little tool. We also had my husband's occupational therapist go over the master bath plans so that we got it just right for his needs. (For resale purposes, we set up the master bath for a right-side disability and our spare bath is set up for a left-side disability but we've been told that most Universal Design houses sell by word of mouth---before they hit the open market---so resale value is not really an issue with these houses.)

If you decide to build a Universal Design house, my advice would be to start your research early and take your time doing it. Don't just build for what your disability is today, think down the road ten or fifteen years. Don't sign off on your blueprint until you are satisfied with your choice of options and the price. The Universal Design features that we included added just under $4,000 above the cost of building a conventional house and it was tax deductible.

A house built for a disabled person does not need to look any different from its neighboring houses. If you didn't see the grab bars in our bathrooms, no one would ever guess that our home is Universal Design. I honestly don't understand why able-bodied baby boomers who are building don't have the foresight to incorporate Universal Design into their plans. Even now that the house is almost a year old, we still can't believe that this beautiful, well-thought out and functional perfect house is really ours. Our only regret is that it took a stroke to get it built. ©

Published by Jean Riva

Jean's main passion in the writing world centers around educating the general population about stroke related language disorders, caregiver issues, widowhood and growing older---often using humor to do so.

July 3, 2014

How My Husband's Stroke Changed my Life

How My Husband's Stroke Changed my life: Redefining Our Relationship was written back in 2007 for a contest on a site that is now pulling all its content off the web and giving the rights back to the authors of the articles. I won the contest and wanted to preserve my article, so I've moved it here.

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My husband had a massive stroke that left him right side paralyzed and with no verbal or written ability to communicate. An event we thought could never happen to us did happen. It destroyed our previously comfortable and often complacent lives in much the same way that a forest fire destroys acres upon acres of land after a lightning strike ignites a single tree. The fire engulfed us and when it burned itself out, it forced us to rebuild and redefine our lives. It was hardest thing we've ever had to do.

It started with a bad headache. No big deal. We all get headaches. Don took a couple of aspirins and went about his day. By noon the next day the headache was worse and he was walking funny, dragging his right foot. It was time to go to the hospital---wrong. We should have gone the day before. One thing a stroke does is make you play the "what if" game for months to come. What if we had gone to the ER when the headache started? What if he had quit smoking earlier in his life or, better yet, never started. What if I had known the symptoms of a stroke? The what if's eat you up alive in the early stages of accepting a permanent disability and the changes that come with it.

Within days after the stroke, two neurologists declared that Don would be "a vegetable for the rest of his life." He was too unstable, at the time, to be moved to a nursing home but that was the recommendation, the only choice given.

"He is too young for that!" my heart cried. I didn't know that strokes happen to people of all ages including to babies in the womb. I didn't know that a thirty-nine year old woman could have a stroke while getting a face lift or that a twenty-four year old guy just back from Iraq could get in a car accident and have a stroke. I didn't know that an athletic guy of thirty-something could have a tiny hole in his heart causing a stroke or that an eighteen year old girl who smoked while on birth control could have a stroke. I know these things now. I've met these people.

Don spent the next one-hundred-and-one days in the medical system. A month in the hospital to get stabilized, a month in a nursing home gaining his strength, and finally a third neurologist gave him a chance at rehab and he was moved again. After the in-patient rehab ended, Don was in out-patient therapies four days a week for five months. I was at his side every single day of those eight months and he was anything but a vegetable to those of us who knew him before the stroke. His body was broken and he couldn't talk but he was still "in there."

When he left the in-patient rehab program Don couldn't go back to his house or to my house---we weren't married at the time. Neither house was a good candidate to remodel to make them accessible for his wheelchair. So I brought him "home" to a one bedroom apartment and I moved in with him. He couldn't care for himself.

Those first eight months were terrible and when we weren't going to therapies I was dealing with selling off his equipment: three front-end loaders, assorted pick up trucks, a street sweeper and nine snow plows. Fortunately, a month before the stroke Don had named me his medical and legal power of attorney in a worst case scenario. It couldn't get much worse. Having our legal T's crossed and the I's dotted ahead of time made it easier, but it didn't help with the cash flow problems, dealing with the insurance companies and SSDI, having two houses sit empty, and losing our sources of income. My stress level was like a bottle rocket waiting for a match.

In the second year out from the stroke I dealt having two auctions, getting the houses up for sale and taking Don to speech classes two times a week. Oh, and some where in there we got married. To this day I can't remember our anniversary date without looking it up. Everything was just a blur of activity back then.

The third and fourth years out I designed a wheelchair accessible house, we found a lot, had the house of our dreams built and we moved again. In that same time frame I also became a mentor on a large on-line stroke support site, moved up to middle management and eventually accepted a seat on the board of directors.

On the anniversary of the fifth year out from the stroke we had a 'Thank God, I'm Alive' party to celebrate Don beating the "vegetable for life" prognosis. It was a turning point in my life as well. The bad stuff was behind us and rebuilding our lives was bringing many good things back into our every day existence. I was able to start doing some gardening for the first time in my life and I got seriously addicted to blogging as a way to share some of the funnier situations that were occurring in my life as a caregiver to a guy with severe aphasia. Looking for humor is situations is a great coping technique for me to defuse the inherent stress that comes with the territory.

At this point in time my still-wheelchair-bound husband is almost seven years out from the stroke that nearly destroyed both of our lives. He is a happy, intelligence guy with a great personality and a positive attitude. We appreciate life to best of our abilities and not a day goes by that I am not grateful for that.

His unprompted vocabulary is around twenty-five words a day---and this from a guy who before the stroke was a gifted storyteller who rarely quit talking. I no longer mourn the loss of in-depth conversations late at night or the political debates we used to have. I no longer ache to have him repeat stories I'd heard a hundred times in the past. I stopped mourning my old way of life a long time ago. But it wasn't an easy transition.

How has my husband's stroke changed my life? There isn't an area of my life that hasn't changed. Aside from the obvious things written about up above, I've learned the true meaning of the words: failure is not an option. I've discovered that in the face of adversity we humans are stronger than we think we are. I've come to appreciate that love can move mountains. My belief in the goodness of mankind as been reaffirmed; for every blatantly indifferent person we've met since the stroke we find a dozen others who go out of their way to show kindness to me and my disabled husband.

A stroke in a family is like a lightening strike igniting a tree in a forest. Its effects are far-reaching and our story is not unusual. Approximately 700,000 new or recurring strokes per year happen in the United States with 163,000 of those strokes ending with a fatality. But I was able to bring Don and me through our own personal fire storm and go on to forge a new life that includes joy and happiness once again. Now, that's something to write about! ©

February 12, 2014


It's been just over two years since Don passed away and he is still very much missed. Since then, I've been at my other blog---The Misadventures of Widowhood---over HERE.