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. 

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

Life Goes On......

Life hasn't changed much for us this summer. Don is still happy and singing the words "Jesus loves me" and "boom, boom, boom" over and over again each morning and sometimes in the afternoons. Recently I told him if we were sharing a room in a nursing home I'd ask for a room change. He laughed and for the next hour he sang the scales using just the syllable "la, la, la, la, la, la, la." He wants to talk. He can't, so he sings. So I use my ear plugs to keep my sense of humor from falling out of my head and to keep his happy tunes from getting in.

It seems a little weird not to be in back-to-school mode i.e. for Don to be starting speech therapy classes now that the colleges are in session again. We could actually go back to group class but with Don's hearing loss making it so hard for him to know what is going on in large, noisy rooms it would be a waste of time. And individual classes are not available to him anymore. He's not unhappy about it, though. Every time we go past the college Don hums the "Pomp and Circumstance" graduation song with much gusto and volume in his voice.

I've been very active on the political sites the last few months---like a crazed lady debating other crazed people out there in cyberspace. Don and I used to enjoy the political back and forth each election year but now it's just me venting to him and him agreeing with me. I tell him what the buzz is in cyberspace and he seems to enjoy living vicariously through me as I have all the fun. If I'm especially upset over something or on an extra high, so is he. It's kind of nice having this tiny connection with the past and how we used to like to talk politics late into the night.

We're lucky that we've been able to get out every other day all summer. The local Starbucks people know us as Mr. and Mrs. Caramel Macchiato, Decaf Coffee Tall. Even the puppy gets to go there and get a tiny cup of whip cream. He keeps his blog up better than I am keeping this one up. If you ever wonder what happened to us, check the dog link in the right hand column and he's sure to have something to say about life on the Planet Aphasia. ©

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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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