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

From the Caregiver Kitchen

The house is quite. For now. Within the hour Don will be up and he’ll be bellowing out, “Jean!” every few minutes. Can’t get his foot started in his pants. “Jean!” Got his arm caught in his shirt. “Jean!” Can’t put on his sock. “Jean!” Of course I could save myself a lot of walking back and forth if I just stayed by his side and helped him get dressed but that would enable him to be even more dependent and give me less opportunities to complain under my breath about my role as a caregiver/spouse. Somehow doing the latter seems to cancel out my fears of total dependency on his part. He does try his best before bellowing out like a cow overdue for milking.

When my husband finally comes rolling out of the bedroom he’ll pull up to the table and starting eating cereal from the bowl before putting the milk in. The carton will be sitting right next to his bowl, but no, I’ll have to pour it in or he’d eat the entire bowl of cereal dry. This, of course, annoys me to no end. It’s bad enough that he's served cereal for breakfast day after day but to eat it dry is an ultimate embarrassment to the kitchen staff---that would be me.

Preparing breakfast is not my forte but just this past week I fried bacon for the second time in my entire life. It only took me hours of watching the Food Network to get up the courage to try. The first time I fried bacon---56 years ago---grease spit at my face and burned my eye. Every since I’ve been buying my bacon served along side of scrambled eggs and toast. Is it any wonder that I consider bacon frying as the crowning achievement in my otherwise lack lust world of cutlery arts? I came. I conquered. I climbed the mountain. Where's my trophy?

When I was a teenager and my mother was trying to teach me to cook she’d often say, “You’d better marry a man rich enough to go to restaurants every night!” I was just not catching on. In my defense she was no Rachel Ray when it came to teaching technique. I learned more from watching chefs Anne and Robert’s TV show, Worst Cook in America, than in my mother’s kitchen. But I did follow Mom’s advice about finding a man who loved going out to restaurants, thus for decades I had a cooking-free kitchen until recent years when Don became wheelchair dependent. Now, I struggle to do what other women take for granted. Oh, well, I have a back up plan, if needed. I can always sign us up for Jenny Craig just so we can get three meals a day delivered to our doorstep. ©

Catching the Caregiver Back Pain Train

I'm just returning from a two week pity party. You know the kind where you don't think you can handle one more metaphorical---or real, for that matter---hangnail. Giving myself a sharp "get over yourself, everyone has problems" usually keeps pity parties off my property---I'm generally an upbeat kind of person---but not this time. This time, four out-of-place vertebrae were playing sadistic games with the nerves running down my leg and they threw open the front door inviting the pity party pack to camp out in the living room. Woo is me! The cry fest started and the tears were only interrupted with occasional outbursts of succulent statements like: "I can't take care of us like this," "Oh, crap!" and "where is a nursing home when you need one?" I even cursed Don and myself for not having the foresight to have a few kids that we could guilt trip into coming over to help their old folks out in our time of need.

The only thing I was able to accomplish these past two weeks is to drive myself five times to the nearest chiropractor, shove simple foods like cereal and TV dinners towards Don, and let the dog outside almost as often as he needed to go. (And wouldn't you know it, my back problem started the day after we had the carpets professionally cleaned.) Heck, I was in such bad shape that I couldn't even kill an ant that was scouting his way across the bedroom in search of a cozy little place to relocate his colony. All I could do is hope he'd scouted his way half way up a wall where I could assassinate him without bending over. He was a smart little bugger. He never did get within my kill zone, but the gods of small favors did send Levi, our curious wonder puppy, to play the poor ant to death.

Thankfully, the pain is less frequent now and not as intense and instead of longing for that nursing home where all our needs could be met I dream of assisted living where someone comes in do the laundry, see that we eat and are not lying in bed bemoaning the fact that the bathroom is twelve HUGE steps away. I'm making progress. Next week I hope to be confident, again, that I can manage our lives with the decorum of a happy, in-charge woman who is not ready to throw in the proverbial towel.

Caregivers and back pain go together like peanut butter and jelly. Or so I've been told. I don't know why it took me so long to admit that pushing nearly 300 pounds of man and metal chair around has taken its toll on my already aging and not so beautiful body. So next week in addition to playing catch-up for the time lost to the pity party and pain I start physical therapy to learn how to minimize lower back strain. In the meantime I'm armed with my new best friends---the 48 inch body pillow and the handy-Danny PosturePro lumbar support. The first time I climbed on that pillow, face down with all four limbs hanging off, I audibly sighed and thought there really is a light at the end of my caregiver, woe-is-me tunnel and its not a train coming full speed ahead. ©

Hear Me Roar!

NOTE to long time readers: Entries between December 22nd down to January 11th were moved here from an old blog I wanted to close. If something seems familiar, that's why.




I went swimming at the YMCA this morning. Jeez, I hope no one calls Social Services and the SPCA. I left Don and the dog alone in the house for an hour and a half while I did deep water aerobics. They were sleeping when I left and a delicious bowl of Kellogg’s was waiting on the kitchen counter for which ever one of them got to it first. This little wifey-poo is through mollycoddling the men in her life. Freedom is sweet.

I swam around with all the other senior citizens and only felt one tiny twinge of guilt over poor, dear Don asleep in his bed. It happened when I saw the lift the Y uses to get people who can’t walk down into the pool. But then I remembered that this was ‘Jean's Time' and guilt has no place taking up space in my head. I am woman. I need to roar! I also need to purr even if I have to scratch my own stomach to feel satisfied enough with life to find something to purr about. Yup, I’ve paid my caregiver dues. Years of putting Don’s stroke related needs first has earned me two sessions a week in the pool where I don’t have think and do “stroke” 24/7. Life is good.

When I got home from the Y, someone had eaten the cereal but neither one of my guys was awake to fessing up to who did it. Nap time together in the Lazy Boy aways comes after breakfast. It doesn’t really matter. I already know that one of them started out with the bowl and the other one ended up with it on the floor. Don’t tell Miss. Manners! I doubt she’d approve of dogs who try to lick the patterns off the china. She’s probably from the school of dogs-are-just-dogs. But the earth doesn’t belong to man alone. We share it with a diversity of God-created creatures. That’s my story and I’m sticking to it. Besides, we have a good dishwasher with a high-heat cycle.

Tonight we’re going to the old people’s club for grill night. Don will be trolling for friends while I stand at attention ready to slap him down if he starts yodeling his favorite one word song. Thankfully, most people at the club are hard of hearing and won’t know if he’s belting out the opening stanza of the ‘Operetta of the F-word in C Minor’ or if he’s making a statement about someone who is smoking at the next table. Yup, it’s still his favorite operetta to perform at the top of his lungs.

After we leave the club we’ll stop at the pet store to pick up some Mother Hubbard treats. Don’t tell Cooper. He’ll be mad enough that we didn’t take him to grill night and shopping at the pet center. Picking out his own merchandise is one of his favorite things to do. Lord, will I ever get the guilt bug-a-boo out of my head? It came with the packet they hand new caregivers when their spouses are about to leave rehab.

Also in the packet I received were several pamphlets from the American Stroke Association. The one on aphasia says: “Unfortunately, there is no general rule about how much improvement to expect. Some stroke survivors who are very disabled in the first few days make a full (or almost full) recovery in a few months. Others are left with serious and permanent language problems. Caring for a person with aphasia can be especially challenging.” No dog do-do, LeRoy! Another pamphlet says: “Being a primary caregiver may change your role in your family. How others in the family see you, what they expect from you, and your responsibilities and freedoms all may change.” Thank goodness, someone had the forethought to point out the obvious.

Okay, I’m through roaring. I’m through pandering for tea and sympathy from my internet friends. I’m through wondering why Don and the dog are in the living room sharing a bowl of Pup Corn---yes, PUP not pop corn. I pitched a fit. I really did, but they both like those little cheese-flavored puppies.

Jean Riva ©

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I Miss Dancing!

When I was seven-eight years old, I got the Gene Autry gun and holster set for Christmas and I worn them to bed more than a few times. I was in love. I even crawled up on my daddy’s lap once, sighed deeply, and told him that when I grew up I was going marry Gene Autry and his horse. My dad had the good graces not to laugh. It could be he was trying to figure out which one I was lusting after the most---the horse or the man. I still have that gun and holster and all of my Gene Autry fan club memorabilia. I never did anything half way, even my first crush.

I don’t know where I’m going with this trip down memory lane. Perhaps I’m looking at my life as if its film that I can edit and splice together into a movie titled: How to Grow up in Ten Easy Lessons, Plus One Really Hard One. Until I became a caregiver for my dad---in the five years before my husband’s stroke---I really hadn’t grown up and I was in my fifties at the time. My life was carefree and fun in my pre-caregiver days. Oh, I’d had my share of disappointments and pain. Who could get to be a half a century old without having a few monsters in their closet? But I try to learn my lessons and move on. Always wear the white hat. Mr. Autry would be proud.

Do you know what I miss? Dancing. I was never good on the dance floor. I have no grace, no natural rhythm, even though the Arthur Murray Dance Studios did their best to chance that when I was a kid. Never the less, I miss it all. Especially the tap dancing lessons I took when I so young that I still worn under pants with the days of the week embroidered on the fronts. Light bulb moment! If I were on the board of directors at Hanes, I’d expand that embroidered panties idea into a days-of-the-months set of cotton briefs for seniors. That way, when folks like me are at the store writing a check, and we can’t remember what day it is, we’d always know where to look to find out.

I also miss the square dances of my pre-teen days; my petty coats swinging and swaying with our do-si-dos and falling on the floor in a fit of the giggles. I miss the rock-and-roll record hops that came a few years later. (Those late night Time-Life R&R commercials are aimed at my generation.) I miss the rhythm and blues clubs and slinky dress dancing of my twenties. And disco. Don and I did some serious courting during disco. How could I not fall in love a guy who once told me, as I roller skated by, “You look like a refrigerator on a dolly.”

Most of all I miss the dancing that Don and I used to do in the 80s, the western stuff that came straight out of the movie, Urban Cowboy. Oh, we were never like John Travolta and Debra Winger struttin’ their stuff at Mickey Gilley’s. We just watched that stuff from the side of the dance floor. But we had our moments when I felt like there was nothing more fun than belly rubbing around a dance floor, thighs brushing from time to time, words passing back and forth---Gosh, I have to stop typing and go get a few ice cubes!

Don was far from a Gene Kelly or Patricia Swayze, and I was certainly never a Ginger Rogers, but I miss the magic and energy that dancing inspires. I miss the honky-tonk bars out west on vacations. Had I known the last time we danced that it would be the last time we dance, I would have taken a mental snapshot. But the sad fact is I don’t actually remember when that was.

I do have a mental snapshot of the last time my dad danced before he passed away. It happened in the parking lot of a KFC. I had been chauffeuring him and his girlfriend around on a date and the tape deck was playing a song from the 40s when my dad asked Martha to dance. He had just been diagnosed with terminal cancer. We all knew he was dying. We all knew it was the last time they’d probably dance together. It was such a bitter-sweet moment, so private and personal---the way they looked at each other---that I had to look away. I’d like to think that if I had a snapshot of Don’s and my last dance, it would be like that---too intense and personal to share with friends.

My dad was a special guy. Even in the last years of his life, when our relationship was often more like mother and son, than father and daughter, he could still make me laugh. One time, when he was being tested for cognitive abilities---something that was done frequently because he was in the first wave of people getting a new Alzheimer’s drug---the psychiatrist had asked him what year it was. Dad gave the wrong answer and when the doctor corrected him, Dad said, “My daughter tried to tell me that in the parking lot, but I didn’t believe her.” Caregiver humor, you’ve got to love it. Another time, in a restaurant, my brother asked my dad if he was taking the noodle on his shirt home for a midnight snack. My dad, picked the noodle off his shirt, threw it over his shoulder, and said, “Hell, no!” and kept right on eating.

What is it I read in an old clipping from Ann Landers? “Old folks talk about the past, because they have no futures. Young folks speak of the future, because they have no past.” When did I get old enough to understand the full depth of that statement? Okay, so I’m having a cry-baby moment. But I know how to fix that. Tonight, I’m sleeping with my Gene Autry gun under the pillow!


Jean Riva ©

painting by ZilleHeinrich

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Finding Our Authentic Selves

Maybe it’s because my dad was a life-long golfer that I love movies with a golf theme. Except for an eight week course I took back in the sixties when I tried to love the game as much as he did, I’ve never played myself. Never-the-less the rich analogies and metaphors used in golf movies can easily apply to life itself, and I guess that’s what makes the ‘underdog’ sports movies like The legend of Bagger Vance so popular with non-athletes like me.

In a nutshell, The legend of Bagger Vance is about a disillusioned World War I veteran---Junah (played by Matt Damon)---who reluctantly agrees to play a game of golf to help a friend save a new golf course in Savannah, circ 1930, playing against the great Bobby Jones and Walter Hagen. Junah was a local golf pro before the war but had spent the last fifteen years being wasted. Trying to practice golf again, he finds the game futile until Bagger Vance---played by Will Smith---comes into his life to be his caddy and to teach him that the secret of golf is the same secret to mastering any life challenge.

“Inside each and every one of us,” says Bagger Vance, “Is one true authentic swing... Somethin' we was born with… Somethin' that's ours and ours alone... Somethin' that can't be taught to ya or learned... Somethin' that got to be remembered... Over time the world can rob us of that swing... It gets buried inside us under all our wouldas and couldas and shouldas... Some folk even forget what their swing was like.”

I went to the library today for the first time since shortly after Don’s stroke in May of 2000. Before the stroke, I was in the library at least twice a week. When I came home today and saw the rerun of The Legend of Bagger Vance on TV it made me think of all the caregivers, like me, whose ‘authentic selves’ got lost in the responsibilities of caring for someone else. Most of us, I think, lost that sense of being able to almost hear our surrounds breathe when we are happily perfecting our swings---wherever that swing might have taken us in our pre-stroke days.

At a critic turning point in the movie, Bagger tells Junah, “Ain't a soul on this entire earth ain't got a burden to carry he don't understand, you ain't alone in that... But you been carryin' this one long enough... Time to go on... lay it down...”

That movie line got me to thinking about why it is that we all tend to carry our burdens around long past the point when we should or could let go of them. For Junah it was the burden of being the only man to have survived a dangerous mission that he couldn’t let go. We caregivers aren’t running away from something filled with that much guilt but, just the same, I’ll bet there are many caregivers and survivors alike who wonder why we survived the trials and tribulations that life handed us, carrying the burden of the stroke event long past the point when we should quit wondering and just start living again. How many of us need to take to heart what Bagger told Junah?---that it was time for him to come out of the shadows and let himself remember HIS swing. I think that may be very good advice for some of us who’ve forgotten who we are.

Can we get our “grace in motion” back? Can we find our authentic selves again? Today I asked myself that question and I answered that I think I’m already am headed in that direction. I’ve been so wrapped up in the stroke support world these past few years that I forgot who I am, what my true swing in life is really all about. Sure, I am still a caregiver and always will be for as Don is a live, but his stroke doesn’t have to consume my life anymore. I can steal an hour here and there to take the advice Bagger gave Junah when he said, “You lost your swing... We got to go find it... Now it's somewhere... in the harmony... of all that is... All that was... All that will be...” I like that thought.

One of the scenes in this movie that I loved the most happened just before the 18th hole when Junah’s ball in the rough moved a few inches. By the rules of golf when that happens the golfer is suppose to call a stroke on himself but no one saw this happen except Junah and a small kid. Thus a moral dilemma is set up when the kid begs him not to do it, not to tell. “No one will ever know, I swear!” the kid says to which Junah replies: “I’ll know.”

This scene is based on a real incident that happened in a tournament between Gene, Sarazen, Bobby Jones and Walter Hagen. When it happened, the marshals left if up to Jones to call it a foul, or not, and when he did call it on him self the marshal declared it to be a “stunning act of sportsmanship.” Jones disagreed. “You don’t commend a bank robber for not robbing a bank,” he said. “This is the way golf should be played.” He eventually lost that U.S Opener by one stroke. The stroke he penalized himself. Seeing the fictionalized version of this incident reminded me of when my dad told me about this golfing, Hallmark moment years ago, inciting a long conversation about morals and ethics. I’ve used that “I’ll know” line on myself every since whenever a moral dilemma might tempt me towards a direction that I shouldn’t go.

Movies about sports, like The Legend of Bagger Vance, are usually pretty inspirational to me and this one was no disappointment. Where else can you hear philosophical thoughts like: “There's a perfect shot out there tryin' to find each and every one of us,” as Bagger put it. “All we got to do is get ourselves out of its way, to let it choose us.”

Jean Riva ©

Painting by August Macke

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Old and Obsolete

I'm measuring up the windows in the Blazer, in the event we have to move in and run away from home. Hey, we'll need curtains for privacy, won't we, if we're going to live in car. Address: Wal-Mart's parking lot. Mitt Romney was just on TV saying how The Big Three has to get rid of their retirees. Oh, that's just great! What does that mean? That GM (where Don gets his retirement check) has to line us up and shoot us all like wild horses in the way of 'progress' because we're no longer useful to society? I love the flip way millionaires can say stuff like that as if the word "retirees" is not a collection of older people, most of whom too old or too sick to go out and get jobs to replace their retirement checks.

People like Mitt Romney don't have a clue how much fat has already been skimmed off the GM stew pot, how hard the company and union have worked to bring the labor costs per car down so they'll be competitive with foreign owned manufactures in the near future. With the 2007 GM/UAW contract they agreed not to give new hire-ins pension rights and starting in 2009 the UAW is scheduled to take over the health care costs. And older workers are being replaced at the rate of 20% per year. Getting rid of the health expense alone will save the company six billion annually. Meaningful restructuring has been going on at GM, contrary to Mitt's opinion. Great hybrids are in the pipeline ready to come out next year and the employee pay package per hour including benefits is on course to drop by 2010 to within a Starbucks cup of coffee to what the foreign owned car makers are paying in their North American workers. If Wall Street hadn't failed, drying up the credit market, GM and the other Big Three wouldn't have had to ask Washington for the bridge loan.

As you can see, on top of the other normal caregiver woos and worries, I have another excuse to indulge in comfort foods in the wee hours of the night. "Fattie, fattie, two by four coming through the kitchen door." Do you think I should do some more measuring in the Blaze to figure out where I can put a small refrigerator to keep me supplied with mint chocolate ice cream? Or may old and obsolete people aren't allowed comfort foods. Oh, well, I've got time to chart out the dumpers in the area that have eatables. Maybe someone will take pity on the homeless and throw out some Twinkies.

On the good side, after eleven months, four rejections and a court hearing Medicare now has to pay for Don's "new" wheelchair---his first replacement since the stroke in 2000. It ticks me off that they gave us so much trouble when I know two guys from speech class who have had several replacement chairs in that same time frame and neither guy is 100% dependent on their chairs like Don is. The orthopedic place that fitted Don's chair said they are hassling one in six applications now. Typical government waste, in my opinion, because a ten minute appointment with one of their own disability doctors could have assessed Don and saved a lot of money. No, they'd rather force us into court. They went so far as to use a statement I made right after the stroke (and got recorded on his medical records) about how Don's house (at the time) was not wheelchair friendly. I had to get a letter from our builder to prove we built a Universal Design, totally wheelchair friendly house. That was rejection number two.

Don't get me started on rejection number three which had to do with Don supposedly not having a caregiver to help him get around in a chair. Hello, what am I? I think it's hurt us that I've never asked for or gotten any outside help to care for Don. Medicare assumes he doesn't need any. Rejection number four was because they said we hadn't proved that he had a stroke, a fact that was clearly documented on the same hospital discharge paper where it said his house was not wheelchair friend. Typical fun and game in the caregiver world of insurance and Medicare.

It's been a long time since I've updated this blog. Its neglect was not by design but rather through laziness. I do keep the dog's blog up once or twice a week. So if you ever wonder what we're up to, via the dog's view of our post-stroke world, check it out. He's the joy of our lives. It's wonderful having a lively little thing around to make us laugh. Stroke and speech wise nothing much has changed. Don is still happy and wakes up every morning singing, "Jesus loves me, oh, well" and generally singing nonsense syllables through out the day. If things go bad and money is tight, I'm going to have to cut Don's anti-depressants in half and that will probably cause him to cut his joyful 'songs' in half as well. So if you ever see an old couple in a Blazer and the guy is happily singing "Jesus loves" and the woman is cursing "Jesus, what are we going to do?" that will be us. Wave and smile, okay? ©

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The Aphasia and Apraxia Challenge for Caregivers

Yesterday Don and I had a half hour 'conversation' about something he really wanted to tell me but the only words he could get out during the entire time were: feet, baker, dad, and gone. And, of course, 'yes' or 'no' as answers to my questions. When my questions got too far off track to what he wanted to tell me, he'd repeat those four words as if saying them over and over again, with increasing the volume, would bring me perfect clarity.

Those of us who routinely deal with someone with severe language disorders know that we start our guessing games with generalities, trying to pull out more details in hopes they will lead us where we need to go to understand what our care recipients are so intent on telling us.

"Is this about something you just read or saw on TV?" ---- No.
"Is this about your dad?" ---- No.
"Is it about someone you know personally?" ---- Yes
"Relative?" ---- No
"Friend?" ---- No
"X-coworker?" ---- No
"Neighbor?" ---- Yes

Thank God, we had a meaningful clue! Then I listed all the places Don had ever lived and found out that the neighbor was from his childhood. I did a mental groan because the stories from before I knew my husband are harder for me to pull out of him than the stories from time frames when we have some shared memories. But he is stubborn and so am I and I've learned since his stroke that there is no way we're going to avoid this aphasia/apraxia driven dialogue. So I sat down for the siege, knowing nothing in the world is more important to Don at that moment that getting me to understand the connection between those four, tiny words: feet, baker, dad and gone. It was at that point that Don did a gesture with his hand, like drawing a knife across his feet and he repeated the word: gone.

Over the half hour I was able to figure out that a neighbor kid of his from when they were both approaching their teen years was held down by one guy while another axed off his feet. Don somehow knew the people who did this to the kid and he told his dad which resulted in the bad guys getting hung. Why this story was on Don's mind is still a mystery. I asked him if he saw something on TV that reminded him of the event and he said, "No." I was afraid to dig too deep into whys and wherefores for fear it would take another half hour to figure it out. But I was curious. I still am and if his brother was in town I'd probably call and see what he knows about the story.

It occurred to me afterwards that if Don had told this same story in his pre-stroke days he would have drawn it out with rich details and made the story last the same half hour that it took to tell it now in his post-stroke language disorders way. He was a gifted storyteller with a million stories like this one and he hasn't lost the desire to share them. The difference, though, is that now the 'listener' does so much work to draw the bare bones of the story out that it's mentally exhausting. All of us who have been there, done that know exactly what I mean. ©


P.S. Some of you might remember that I entered a writing contest a while ago that had a $5,000 prize. I didn't win---didn't really think I would---but here's a link to the article I wrote for the contest. I'm proud of the way it turned out. Disaboom: a Web Company Making a Real Difference to People Touched by Disabilities.
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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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Show Us Your Best

Over a person’s lifetime there are many labels used to describe that individual. Some labels we’re glad to outgrow like “teenager” and “student.” Some labels we may love having like “mom” or “dad.” Some labels define our professional place in the world like “doctor,” “officer” or “senator.” Other labels may define our passions like “artist,” “sports fan” or “musician.” Each of us carries with us at all times at least a dozen labels.

There is a whole sub-category of labels that we’re not always sure how they fit into our lives. “Survivor” and “caregiver” could easily fall into that description. Being a survivor is a positive label but many survivors, understandably, wish the label didn’t have a reason to hang itself on them. Not that they’d necessarily want the opposite end of the scale, which is being dead or a victim wallowing in self-pity, but they just haven’t found a way---yet---to be proud of overcoming the life-challenges a stroke brought into their lives.

Being a caregiver is a label I neither like nor dislike. It just is what it is, although early on in the process of becoming one it felt like a step backwards in the area of human relationships. It felt like I’d had to trade in another, more beloved label to get the caregiver status. For example, I went from daughter to caregiver to my dad and then again I went from best friend to caregiver with Don. “Caregiver” felt negative, like I was in charge of something I’d rather not be in charge of: another human being.

I remember the first time someone called me a caregiver. It was shortly after Don was released from the hospital. I had wheeled him into a medical office and the receptionist said: “Are you your dad’s caregiver?” Don and I are very close together in age and it really hurt to have someone perceive him as being that much older than me. It was the first time that I realized that our relationship truly had changed with the stroke. We were no longer just Don and Jean. It happened a lot in the first year post-stroke---being mistaken for daughter and father---but as Don got better and looking more and more like his old self, people quit hanging the father-daughter labels on us. A little color and a lot of animation in his face turned him from looking like a “victim” to looking like a “survivor.”

There is a phrase I heard several times in commercials a few years back: Show us your best. God, I love that phrase! I tried to research its origins but all I could find was a lot of photography sites where people were invited to show each other their best photos on various topics. The phrase applied to sports, though, takes on a whole new meaning---of working hard in the past to achieve something great in the present. I don’t follow sports but I can’t help but admire anyone who has earned the label of Olympic contender. I wish the Para-Olympics for disabled athletes were covered better by network television. I saw them last year and watching people with disabilities competing in many of the same arenas and venues of the regular Olympic athletes puts special meaning into the phrase: show us your best. It also puts a new meaning to the label of “disabled.”

Maybe we need a Caregiver's Olympics so all of us who wear that label could be prouder of what we've achieved. But there are no metals to win for that kind of dedication, determination and courage.........except for the ones we caregivers give each other with a soft-spoken, “I understand” or a loud cheerly shout of, "Way to go! You stepped up to the plate and showed us your best!"

Jean Riva ©
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Stroke Anniversary Number Eight

May 21st, 2008 will be the eighth anniversary since Don's massive stroke, a stroke that changed the direction of our lives as strokes do for most people. This year, to celebration the fact that my husband beat the prognosis of two neurologists and is far from being “a vegetable for the rest of his life,” as they predicted, I'm planning a day trip to Lake Michigan. There's a quaint tourist town on the eastern shoreline that we've both been going to since we were kids, long before we even knew each other. A ship that once took me on my high school class graduation trip is docked there, a maritime museum now. For some reason it gotten smaller as the decades went by. I can't imagine spending a week in one of those tiny cabins now, especially with Don's wheelchair in tow. Perceptions changes over a lifetime. Back then, I thought we were traveling like the 'upper crust' of society.

I suppose some people think it’s strange to celebrate a stroke anniversary, but it could have been so much worse and that ‘could have been but wasn't’ is really what we celebrate. Yes, Don is still wheelchair bound and can’t say more than a handful of unprompted words but he is cognitively almost back to his pre-stroke days and we can still find meaningful things to embrace and keep us busy from day to day. But more than any other benchmark, the stroke does not take center stage in our lives like it did in the first few years when therapies, changing priorities and goals, and downsizing our lives filled every waking moment. We arrived on the other side of the firestorm several years ago, rebuilt our lives from the ground up and now enjoy the fruits of our hard work.

I still visit the stroke supports sites from time to time but the strong connection I once felt there is holding on by a very thin thread. And that is a good thing in the recovery world. After all, it's the goal of any support group to help people to get their lives back on track and living in the real world again, however chanced and challenging that may be. When a member of a support group no longer needs to get or give advice or compare their battle scars the group has been successful in its mission.

One thing I still try to share with people new in the stroke recovery world, though, is the concept of acceptance. Some people mistakenly think that if they accept their stroke limitations---or those of their spouse---that it's akin to surrender and giving up. Nothing could be farther from the truth. Acceptance of what has happened gives you the power to fight your best fight for recovery. It's when people live in denial of their fallibilities or they play the blame game, mad at God and everyone else in their path, that they defuse their power because that denial and anger eats up an enormous amount of energy and time. Acceptance gives it back so you can redirect your resolve to places that will make a difference in the quality of your life.

Don and I have both worked hard over the past eight years to overcome "the vegetable for the rest of his life" prognosis and he's come a long way cognitively, physically and communication wise since the first few years out from the stroke. (Note: communication is more than just spoken or written words.) His ability to be good natured and happy despite his disabilities inspires people where ever we go. I'm proud of him and I think he is proud of me as well. Yesterday at the YMCA while we were both working out we were surrounded by young, healthy people Don looked at me with deep emotion in his smoky-gray eyes and said, "Me cool."

Those of us who live on the Planet Aphasia know that reversing relationships is common with speech disorders, so I pointed to him and asked, "Don is cool?"

"No," he replied and pointed to me while saying, "Cool" again.

"I'm gray haired, old and full of wrinkles and you're surrounded by beautiful young people and you can still say I'm cool?" I teased back.

"Yes!" he answered with gusto to which I gave him a rare public display of affection and then we went back to our workouts. Perception, as I said up above, truly does change as we march through our lives. When you're young and emerging into life I doubt anyone would label an old person working out in a gym as "cool." It's only through the grace of God, love and admiration for our fellow man that we learn to look past the exterior of anyone---disabled or not---and see the spirit within. ©

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We're Training at the YMCA

Life has been busy in the past few weeks since my husband and I joined the YMCA. They've got him on a three day a week program of weigh training for his left arm---his right one is totally flaccid with not an ounce of movement. And he's doing a series of standing and sitting from his wheelchair, using a weigh machine to pull himself up. While standing, every third time he tries to stand on his neglect leg (right) for a few seconds. Supposedly this will to help wake up the nerve endings. Already, I can see an improvement in his transfers in and out of his wheelchair. This winter after his aorta aneurysm surgery it was taking as many as fifteen tries for him to stand up enough to transfer and today he did it several times on the first try. Strong transfers can make the difference between staying at home or going to a nursing home so this is a worthy goal, believe me.

Don is walking some at the YMCA, too, and also working on leg exercises---some of which are trying to wake up the muscles that can help him kick his right leg out and up. When Don was in physical therapy last fall, they isolated the muscle groups that aren't working for him so those are the ones we're hoping to fire up now. All the "normal" people coming and going from the Y are encouraging and positive to Don as they pass by. It's a heart-warming and upbeat place to go.

When Don finishes up his routine, I leave him at the Y's coffee shop and then I go do the bike or treadmill for fifteen or twenty minutes. The original plan was for me to do the swim classes on Tuesday and Thursday, which are early in the morning before Don gets out of bed. (I loved those classes when I took them last summer.) But so far, our weekly schedules have been so crazy-busy that it just hasn't worked out that way. That will change soon. At least I hope so because I just signed us both up for a sit-and-fit group class, also at the YMCA. It will probably be a little low key for me but I have to be there with Don because of his language disorders, so I decided I might as well take it too. It's an opportunity for him to interact with other people with physical limitations which I figure will be better for him than the exercise.

On the speech front: A month or so ago I mentioned that Don---for the first time since his stroke 5/21/2000---spontaneously tried to spell a word he couldn't say. This past week he couldn't say 'celery' and I ask him to write it and he was actually able to do it without any help at all, misspelled but still recognizable. His language is still mostly nouns-only with a very few two and three words phrases thrown in and virtually no written abilities, not even the alphabet. The professor who oversees the speech group we're still going once a week recommended working on writing, since Don's brain seems to be ready for it. So we're back to doing homework at the kitchen table again.

There you have it, the reason why my real life is taking time away from my virtual life. ©
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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

Crazy Glue on my Shoes

Some times I hate listening to music. It makes me cry too often. I mean, who wouldn’t cry over lines like: “I can only give you love that lasts forever…” when your stroke survivor husband is sleeping in the other room and you’ve just finished watching The Way We Were?

I loved that movie when it first came out in the early ‘70s. Plot: a Jewish left-wing intensely political woman falls in love with a white, Anglo-Saxon Protestant who, by his own admission, had everything in life come too easy for him. It was that movie that made me fall in love with Robert Redford. (Insert a big sigh here.) Barbara Streisand as a movie star I can take or leave but the way she sang the theme song of that film still gets to me.

“…Memories may be beautiful and yet what’s too painful to remember we simply choose to forget…”

We see bits of ourselves in most books or movies. After all, life-experiences are for the most part timeless and universal. I was never as political as Barbara’s character, Katie, but I was certainly far more political than the guys I dated back before I met Don. I was more into sociology, philosophy and social causes, too. I’m eternally grateful that none of those relationships ever worked out but in my twenties I didn’t, of course, see it that way at the time. I dated a lot of aspiring couch potatoes back then and I never would have been happy if I'd have gone on to a life that included serving beer and snacks to the boys every Sunday afternoon while they rallied their favor sports teams towards the play-offs. "Me man. You woman." I love the fact that with Don I was able to grow in a direction of my choosing with his full support and encouragement, and I like to think I did the same for him.

“…So it's the laughter we will remember whenever we remember the way we were….”

I look back at all the memories that Don and I made together over the years and I know deep in my soul why I view these caregiver/survivor years as just another chapter in a long book of chapters. We’ve done a lot of living and growing together. We've explored the outer envelope of love and respect in a way that appeared unconventional to the causal eye but really wasn't.

Thumbing through our memories isn't about wishing for the past. It’s about loneliness that is often hard to bear. It’s about being two peas in a pod that is hanging on to the mother plant by a thin thread called the future. It's about worrying about the wind that will come along and knock the pod to the ground. The cycle of life goes on, seed to plant and plant to seed.

I suppose some people will misunderstand a caregiver who spends an evening looking back over her life and wondering what would have happened if she’d taken door number one or two instead of door number three. I don’t view my reminiscing in a negative way. It's not a wistfulness or longing for the past. Maybe that's because I realize that I didn’t turn out all that bad and that my choices led to a good place despite the bumps in the road along the way. Reminiscing, for me, is about going back to the past to gather strength to go on in the future. And memories are part of the commonalities that bind Don and me together. They, along with soul mate kind of love, makes our commitment to one another stick like Crazy Glue on our shoes.

“…Memories light the corners of my mind. Misty water colored memories of the way we were...”

Jean Riva ©

Photo: Don and me, circa 1973

Immortality

We all face our own mortality although some of us are good at pretending it doesn't exist. Usually I'm able to ignore thoughts of dying or of losing someone I love, but sometimes the concept slaps me in the face and can't be ignored.

Last week I had one of those slap-downs when we were waiting at the hospital while my husband, Don, got a heart catheterization. A catheterization, according to the American Heart Association is a procedure where a cardiologist threads a thin plastic tube (the catheter) into an artery and manipulates it into the chambers of the heart and coronary arteries. Also according to the AHA "the test measures blood pressure in the heart and how much oxygen is in the blood." The catheter injects dye into the coronary arteries that can be viewed and studied with an overhead camera.

Don had four heart by-passes done about eighteen years ago and, I'm told, they usually have a life spam of ten-twelve years. Sure enough, Don's catheterization revealed that one of those by-passes is completely shot and "will never come back." Two are still going strong and the forth may be a candidate for a stent someday. Maybe.

Before the cathe started, Don was wheezing from what I thought was a cold so they sent in a pulmonary doctor to do a breathing treatment. He kept asking ominous questions regarding Don's past smoking history and he seemed surprised that he wasn't using oxygen at home. In short, he scared the blissful, head-in-the-sand attitude right out of me as thoughts of emphysema and lung cancer filled my head. The next hour of waiting for a blood test to come back that would prove one way or another if Don's wheezing was from bronchitis or something more serious was extremely difficult. When a person, like Don, had been a heavy smoker for a lot of years you can't help thinking that lung cancer is going to be the piper that demands the last coin in their pocket. Thankfully, the cause of the wheezing was ruled to be 'bronchitis' so they went ahead with the catheterization instead of admitting Don. He dodged another bullet.

For the next few days I worried about the 'what ifs' ahead of us, borrowing trouble from the future and generally forgetting the caregivers' Cardinal Rule about living in the moment and appreciating what is here, right now. The bottom line, I finally had to tell myself, is that after all the testing and all the worrying nothing has really chanced. Don is still in my life and he still finds life worth living. We don't have to say good-bye just yet and I don't have to make my way alone in the world. So I made a conscious choice to go back to a land where ignoring our mortalities makes sense in a crazy kind of logic that demands no explanation from those who have been there, done that. ©
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Old Dogs Can Learn New Tricks

People dealing with aphasia and apraxia will understand my excitement at having my husband finally---for the first time since May 21, 2000---try to spell a word that he couldn't verbalize. It's the first time he's done that. It always shocks me when Don comes up with something new like this. The brain really is a mysterious place where spontaneous healing can happen. After he did that, I recognized right away that this could be an important break-through so I tried having him write the word on paper. It didn't work. He could only write half the word, just like he could only spell out half of it with his voice. Then I had him write my name on paper. And he could do it! The only word he's been able to initiate in written form until now was his own first name and that took five years for that to happen. This week he added my name to his list of written accomplishments. How cool is that!

After his group class at the college on Thursday, I told the speech therapist/professor about this new development. She agrees we need to start trying to build on the change that appears to be happening in Don's brain. So it's back to doing homework at the kitchen table again. This time we'll be working on spelling and writing.

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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Excellence in Teaching

One of the professors at the college where Don had been going for speech therapy for the past six years just got an award for excellence in teaching. We were invited to see her "presentation speech" because, she said, the clients who work with her students are such an important part of the speech pathology department. I'm glad we were invited. It made me tear up in several parts when she talked about things like putting ourselves in the shoes of people with aphasia and apraxia and imagining what it would be like to have so much to say and not be able to get out anything out but the 'F' word. Teaching compassion along with the analytical aspects of being a speech pathologist is one of the components they like to stress on that campus, she said.

A year or two ago this same professor had done a half hour interview of Don and me to submit---along with other client/spouse interviews---to a project someone else was doing that involved creating videos to go along with text book material that future speech pathologists study from. She included some clips of those interviews in her presentation today. Don's and my clip involved answering the question, "What is the one piece of advice I'd give to future speech therapists?" I answered to treat their clients like they would anyone else they meet for the first time, to not talk down to them. It was interesting to see Don on the video when I said that. His first "yes" was a normal tone but then he repeated that "yes" several time with increasing conviction each time. Then the professor followed up with a question asking if that happened often that people talked down to him. I replied that many people seem to equate having a language disorder with being mentally challenged. Don, then punctuated my reply with a very angry, "Oh, yes!"

Excellence in teaching: in a big way, I think Don deserves an award for excellence in teaching. He taught many student speech pathologists that clients with aphasia and apraxia can have strong personalities underneath the disability. He still teaches this to the people he interacts with in the general population. And we were told today that part of that video of Don and me made the final cut to the text book project, so Don will continue to teach far into the future.

Jean Riva ©

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