December 29, 2007
I know all the rules that social services has to follow, now, before releasing people from the hospital are well intended, but it's still a scary thought that someone other than me can determine if I'm capable of caring for my husband at home, or not. The nurses at the hospital, in packs of two, all struggled to transfer Don but when I was there I was able to transfer him all by myself. They just didn't know his little quirks. Quirks like how he always has a false start the first time trying. They would tug and pull on his gate belt on his first try where if they'd have just given him a chance to try again, he would have done most of the lifting and shifting under his own power. It didn't do any good to tell them because each day it would be a different set of nurses and aids. And each day they'd fill in that little line on the nurse's notes "moderate or full assist" and thus social services has to follow up with our going home plans. Oh, well. At least he's home and we'll get our lives back as soon as Don proves that he can be as safe as I know he can.
December 27, 2007
The mornings go fast in Don's room with succession of professionals coming and going. Today it started with two physical therapies who got him out of bed and wheeling his chair up and down the hall. Then the head of the rehab department came down to talk to us about the possibility of moving Don to their floor to get him stronger for transfers before releasing him. The social worker came next to interview me about our needs at home. "No, we don't have steps." "Yes, we have grab bars." As soon as she left Don had urgent business to do in the bathroom which took two men and a truck to get him on the toilet. His lunch came next and then a nap.
I went down to the café while Don slept. Chicken again. Already I'm bored with hospital food. Then I took a side trip to the gift shop to read the magazine covers before heading back upstairs. The afternoon was quiet as I read Barack Obama's book, "Dreams From my Father" until it was time to order Don's dinner and go back home to a sleepy, old dog who looked as if he hadn't moved all day long.
Every day I go down to the hospital thinking this will be the day Don will come home. After all, it was only suppose to be one night in the hospital. But INR readings were keeping him hostage at first and now they've added his physical ability to get back to his 'base line' as a second criteria to meet. Base line for Don is independent transfers. Part of the trouble at the hospital is that all the bathroom grab bars are set up for left side disabilities and Don is right side disabled. I requested a room change thinking they'd have reverse set ups in other rooms like they do every other room in motels. But this beautiful, brand new hospital has absolutely identical rooms through out. Identical rooms, I'm told, are supposed to make the nursing staff more efficient. Maybe so, but it sure puts all the right side disabled stroke survivors at a disadvantage and in Don's case it's making him look more caregiver-intense than he'll be at home.
Tomorrow we're expecting another snow storm to come through so I'm not looking forward day eight's commute.
Jean Riva ©
December 24, 2007
I left the hospital today, came home to an arthritic dog with cataract encrusted eyes and he reminded me even more of how fragile life can be. Don, the dog and going back and forth to the hospital couldn't help but bring ghosts of another holiday season not so long ago when I held my dad's hand at the stroke of midnight on Christmas Eve and shortly afterwards he ceased to be. Dead while the rest of the world rollicked in colorful wrapping paper and ribbons. Dead while shiny stars stood tall on the tops of twinkling trees and gazed down on laughing children who were too young to understand or care about the pain in my heart.
I had no Christmas spirit this year. No cards went out. Short of a wreath on the front door, no decorations shouted out their joy around our house. I barely was able to open greeting cards that arrived in the mailbox. I felt guilty cheating Don out of the traditions we've carved out for ourselves, living here these past few years since his stroke. But buried deep in the corner of my mind was the fear that Don would die or be forever lost in the maze of disabilities that would finally put him in a nursing home. It was a secret I couldn't share that I knew I couldn’t have come home, if the worst had happened, to a house with Christmas decor. It would have mocked me for being so presumptuous that Don would beat the odds once again. And it would have forever sealed the association of tinsel and boughs of holly with death. But the worst didn't happen and I am grateful that in a few days I'll no longer have to look across the empty space that Don usually occupies beside me in the bedroom.
The dog is doing what dogs do---begging for treats and his little toenails clicking on the Linoleum keeps the fear of the future and the sadness of the past at bay as I watch "It's a Wonderful Life" for the umpteenth time in my life. That old black and white movie with James Stewart and Donna Reed is Don's favorite Christmas film. It seems quite appropriate as I end this essay that I should hear Clarence, the angel-in-training, sum up the entire message of the film in two sentences: "Each man's life touches so many others' lives. When he isn't around he leaves an awful hole, doesn't he."
Jean Riva ©
December 21, 2007
After it was over the surgeon told us that the aneurysm started just under the heart and went all the way down the stomach and into each leg. We were shocked to hear that. I was visualizing a ping pong shaped thing, not something the shape of a football and that long. I commented to the doctor that "I don't know how you guys have the guts to do stuff like that" and he answered back, "I was up at four this morning wondering the same thing." I'm glad I was blissfully ignorant about the size of that thing going into the surgery. I was nervous enough thinking it was smaller.
Thanks to everyone who sent their prayers and good thoughts our way. I've been up since three with very little sleep before that so I'm off to bed.
December 19, 2007
December 6, 2007
There are two ways to do the surgery which is essentially putting in a stent. They can go through the groin with camera aided instruments or go through the stomach. In Don's case they are starting out through the groin but made sure we knew that that could change while he's on the surgical table. If they can do the groin surgery, it will be one over-night in the hospital. If they have to go through the stomach, it's a seven day recuperation in the hospital. With Don's stroke related issues---lack of physical mobility, right arm completely paralyzed, hearing loss, severe apraxia and aphasia---a hospital stay could get complicated. I hope will all my heart he/we doesn't have to go through that!
December 1, 2007
We also got the notice that Don will not be asked back to individual speech therapy next semester at the college where he's been going the past 6 1/2 years. We sort of knew it anyway but now it's official. Their explanation was that they only have ten students in the program next semester and a long waiting list of potential clients and they want to give people who've had more recent strokes a chance to go through the program. Don doesn't seem depressed about it but he's not happy about it either. Understandably. They've helped him a lot. He's had a good and productive ride and I'm grateful for that.
November 14, 2007
The next day at home I tried to get Don's foot and his new AFO into his brand new shoe that was fitted at the same time as the brace. I struggled and fumed and tried the shoe horn and a few choice words but I couldn't get them on. Then Don pointed to the other shoe lying on the floor and laughed. I'd been trying to put his right foot into his left shoe. Oops. Finally, we were good to go but it still wasn't easy to get the footed brace into the correct shoe. It will get easier, I'm sure, as I practice but I'm not looking forward to adding this to our daily routine although the trade-off will be worth the effort. Unfortunately, he only had the brace on a short time before he wanted it back off. There's a break-in schedule where you add an hour each day and already we're off schedule.
His new wheelchair also got its finally tweaks on the same day his carbon fiber brace came in. It's got a solid plastic and lumbar cushion for his back which is frustrating the dickens out of me. It has to come off or on each time you fold or unfold the chair when you're out and about town. That means the back pack also has to come off as well. Monday the orthopedics guy showed me what I was doing wrong---not clicking the seat part fully down---so things are looking up. I still don't have the process down pat but I'll learn, hopefully before winter sets in. I can't imagine standing out in a storm doing an imitation of an idiot. As inept as I am about sliding those slots in place it's a wonder I ever figured out sex.
Tuesday I went into the aquatic pool with two physical therapies and Don. It was his last session and the aquatic specialist was teaching both me and the other PT how to work with someone with Don's issues. I plan to start taking him into the YMCA pool between the holidays thus the "Winter of Don" will begin. We're making up our own PT program and will go three times a week. The aquatic specialist gave me all the plastic coated diagrams she's been using with Don in the pool so I'll know exactly what to do. Hopefully, when he has his last land therapy, either Friday or next Monday, the PT will give me some written material as well. I'm excited about aquatic therapy for stroke survivors. Don's definitely made some gains that I don't think would have been possible with just physical therapy on land. If nothing more, just being able to move so much better in the water gave Don a renewed interest in taking part therapy.
I'm a little down right now, though. This morning I got a call about the results of his CAT scan. The aorta aneurysm they've been tracking has grown to 6 cm in diameter and they usually operate at five. It was 4.3 cm a year ago. Two steps forward and one back. Let's hope it's only one back. I'm a little freaked about the possibility of him having another stroke with the procedure. We go to the surgeon's office tomorrow. I'm hoping she can do the stent instead of abdominal surgery. I'm worried and want it over as soon as possible.
But on the good side, we were able to get the new docking arm put on the new wheelchair so I can use the chair lift in the Blazer again! Old lady caregivers shouldn't have to risk getting hernias. We don't have time.
Jean Riva ©
November 8, 2007
"NO!" I replied, my voice edged in full panic mode, "Every thing is not okay." And I explained what was happening.
The professor flagged down a student she knew and sent her over to the conference hall, several buildings away, to sign out one of their curtsy wheelchairs for us to use while we were on campus. It seemed like it took forever and while I was waiting I kept ordering Don not to move even one inch which is hard for a friendly guy with short term memory issues to do. The college kids going back and forth in that lobby have always made him forget that we have places to go and things to do as we pass through.
Finally, I got him transferred to the loaner chair and up to class. While he was there I got his broken chair back in the Blazer, tracked down a phone book and made arrangements to stop at the orthopedics place on the way home. Don's had a new wheelchair on order for a couple of weeks and I knew it had come in; we were scheduled to pick it up next Monday. Timing is everything. They had just put it together that afternoon. They didn't have room on their schedule for a full adjustments appointment and the cushions hadn't come in but the chair was usable. Life was good again.
Timing is everything. This past month I've been working at the YMCA on a machine to strengthen my upper body and since I can't use our Bruno wheelchair lift in the Blazer until the new chair gets another style docking arm, I have to lift all forty pounds of its awkward metal and plastic in and out of the car until next week. So the extra muscle strength has come in handy although I still struggle and use a few blue words. Thank goodness a list of handy-dandy four letters words came with a Welcome to Caregiving packet.
This whole thing with the wheelchair turning into a pile of junk could have been so much worse. We were extremely lucky to have it happen where it did. We were extremely lucky that we had a new chair on order and to have the orthopedics place stay open until we got there to pick it up. Timing and nice people truly did save us from having an inconvenience turn into a disaster.
Jean Riva ©
P.S. I published a blog entry here last month titled Inconvenience or Disaster. I didn't think I'd be using the stress reduction techniques I talked about in it so soon.
November 4, 2007
Obviously, my morning was not going well but Don was in his Aphasiac-WonderBoy mode singing made-up words to a polka beat. "Oupa, oupa, I, eeee, oh, goombya, goomdya, la, la, la." Sometimes you just want to verbally smack the happiness right off his face. That impulse was almost too strong to resist when we were at the restaurant and he rolled over to the cookie case to make out his mentally wish list. I opened my mouth to snap out the words, "You're still diabetic, you know" but instead of the words coming out it hit me, then, that I hadn't taken my blood pressure medicine when I got up. Crap.
Having recognized the primary reason I felt bitchy I worked on keeping my mouth shut lest I unleash my inner Shrew Lady and get us banned from our favorite restaurant. So I sat there quietly waiting for our food to arrive while eavesdropping on the conservation going on behind me. It was coming from a man---looked divorced---and his 8-9 year old son. The son had gotten into some trouble at school and after telling his dad about it he asked if his dad had ever done anything like that. His father then launches into a monologue cataloging all his high school pranks, talking and laughing as if they were two buddies sitting on bar stools. God, Shrew Lady was getting hard to contain! I glanced back over my shoulder at the guy and that glance must have looked more like a schoolmarm glare because he sat up straight in his chair, and said, "I'm telling you all this, Mike, because I want you to be better than I was." Shrew Lady wanted to throw her hands in the air and say, "It's about time you remembered who you're talking to." But she didn't. Good.
We had to go to the grocery store that afternoon but first we stopped back home to take the pills I'd forgotten earlier. As I walked past my EZ DOES IT cart that I'd broken the day before Shrew Lady really needed the old Don to talk her down from the ledge. But, of course, his language disorders makes it impossible for the new Don to do that. "Oupa, E, I, oh, goombya, goombya, oh, bridge, " he sang instead. Bridge! A real word in his song! Things were looking up. I knew exactly what he meant. Coming home from vacation years ago, we had the radio on to a Wisconsin station when they played a polka sung by a local band and the lyrics went: "Why don't you jump off the bridge polka" repeated over and over through out the entire song. Over the years, any time either of us would sing that line it would make us laugh. Don was trying to cheer me up. Sigh.
Later I was bringing groceries in the house without my EZ DOES IT cart and Don was in the kitchen waiting for me to clean the wheelchair's wheels off so that he could go into the carpeted rooms. "Seven years," he said, shaking his head, meaning how long it's been since his stroke.
"Yup," I replied as I always do when he says this, "But we're doing good considering the alternates."
"Thank you," Don said, hugging me with deep emotion in his eyes. Sometimes it doesn't take many words to speak volumes.
With that hug Shrew Lady was out the door and Nice Nancy came in. "I love you," Nancy said, deeply grateful that he is still in her life.
Jean Riva ©
Painting by Sisley Alfred, 1885
October 28, 2007
Don, in the closet today, was almost comical. Scratch the ‘almost’ out of that sentence---he was comical. He was trying to decide between his deer hunting shirt with a matching logo hat and a tee-shirt with a zipper front John Kerry fleece jacket. (Ya, he knows that Kerry lost the election a long time ago, but he loves the joke of wearing the jacket now.) Politics or hunting? Hunting or politics? After five minutes of this dressing dance, I had to resolve his dilemma so I could get in the closet or I would have had to go out today in my common sense, white undies. That would not have been a pretty sight. Hunting won. Politics will still be good next week and his big adventure in the woods will be old news by then. The choice was a good one, everyone was anxious to hear about how the hunting day turned out.
Stroke progress comes in many small and wondrous ways. They creep up so slowly sometimes that so you hardly notice it happening. Don has gone from not knowing a shirt from a pair of pants and not having the words for colors to deciding something as complex as which of two fashion statements would stand for his mood and sense of humor for the entire day. Clothing has become a silent form of communication for Don. I just counted; he has twenty-seven logo tee shirts and a dozen more in a box that our dryer mistreated. And then there are all the baseball style hats lined up on hooks with saying and logos on them.
Don’s “language of clothing” works both ways, too. If he sees a logo shirt or hat on someone, he’ll roll up to that person and point to the writing or picture on their clothing. The stranger usually ends up reading it to him thus forcing them to interact with an alien from the Planet Aphasia. Most people are very nice when he does this, a few are uncomfortable, at first, being confronted by a speechless person in a wheelchair but Don usually wins them over quickly.
Don's joy in reading tee-shirts is so evident that people have been known to give him shirts. It happened twice this month. Both shirts were custom-made and neither person would let me pay for the tees. They just ordered the shirts and presented them to Don when they saw him rolling around, and I’m not talking about gifts from friends. Both of these last shirts came from nameless acquaintances in places where we frequently go.
My clothing is not as vocal as Don's but I did buy a chenille bathrobe recently and it talks to me. It gave birth to purple dust bunnies all over the house and they are screaming, “It’s time to get off the computer and clean house!
Jean Riva ©
October 26, 2007
The physical rehabilitation place we're going to for Don's land and aquatic therapies is sixteen miles out in the boondocks from where we live. On the way home from the place yesterday I missed a turn on a rural road and got lost---sort of. It's hard to get truly lost in a county where all the roads run true north/south and east/west with the north/south roads all numbered in sequence. The east/west roads are mostly named after the lakes they run past. They don't call Michigan the water wonderland for nothing. Lost or not, we ran south as the numbered roads dropped down to where we thought we should cut east for a while. We took one of the few roads that wasn't named after a lake.
That put us on Red Pine Road, a road we'd never been on, and it didn't take us long to figure out why that one road out of a half dozen we'd past wasn't named after a lake. The towering pines along both sides went on for miles and they were so tall they nearly blocked out the sun over head. Red pines are self-pruning and have long lengths of their lower trunks that have no branches and the conifers looked as if they'd been precisely planted six feet apart in rows parallel to and perpendicular back from the straight-as-a-pin road. We figured they could have been part of a post-depression era New Deal/WPA project. Michigan has many WPA "ghosts" lingering about. (The Work Project Administration, under Roosevelt, was designed to overcome the widespread unemployment that nearly destroyed our country back then.) It was neat driving through a piece of history---however the trees got there---as the lowering sun cast a ladder-like pattern across the pavement.
Today I started out down at the YMCA walking on the treadmill. If someone had told me a year ago that I could stand up for a half hour straight---let along walk a half hour on a treadmill---I would have told them they were crazy. Have I said lately how much I love my new knee? Nine weeks out from the surgery and it's the only joint in my lower body that doesn't yell at me, "Jean, you're getting old!" I'm even starting to look like I belong in the gym. Gone are the polo shirts that get too sweaty under the collar. Gone are the wrap-over-the-head earphones. Yup, I'm sporting discreet little ear plugs to watch Ellen or Oprah on the treadmill's build-in TV. I'm also carrying a water bottle and wearing tee-shirts and sweats. The latter attire will be next to go as soon as I figure out where people go to buy those cutesy little workout clothes with the racing stripes up the sides that make you look like you're going faster than you really are.
My afternoon was spent as the Chevrolet dealership getting the oil changed and everything up to snuff for the coming winter months. The heater wasn't working right, the tires needed rotating, all the fluids needed to be checked and topped off, and the computer was telling us that the battery was dead when it's just a spring chicken and was perfectly fine. With all our Blazer issues resolved we finally left the place two-hundred dollars poorer and I had a headache from watching Don bounce off the walls in the waiting area. He had such a good time trying to interact with all the people there and my aphasia decoder ring got a royal workout. Sometimes I'd like to park Don and his wheelchair facing a corner and tell him to "stay!" until I can have two consecutive thoughts of my own.
Jean Riva ©
October 23, 2007
Don got up---for the second time---after I'd scuffed down those English biscuits. Good. I figured if no one saw me eat them, then they don't count. Right?
Back to Don. Instead of getting ready for his shower, as he was suppose to be doing, the gods of aphasic insisted that we have a "conversation." For fifteen minutes Don made zoom, zoom and car brake noises to accompany his hand gestures while I played twenty-one questions trying to figure out what was so damned important that he'd chance running our shower times so close to the wire that I'd get cheated out of mine. But I'm a genius at decoding aphasia/apraxia talk---if I do say so myself---and I finally figured out that Don wanted to buy gift certificates at a gas station to give to the guys he hunted with last Saturday. Sunday I had been saying we should stop at Applebee's on the way home from speech today to get a couple of gift certificates. I figured if his two hunt guides took their wives out to dinner on Don then the wives would feel better about letting them go again next week. Gas money won out. When it takes a stroke survivor fifteen minutes to convey a simple thought, it's hard to argue with the guy.
We took off for speech therapy and I drove the thirteen miles through town traffic with a Starbuck's caramel macchiato in hand. Glory hallelujah, I made it with nearly no red lights to slow me down and no other drivers that made we want to flash them my middle finger. Not that I would do that but I'm old and you never know when that common sense and good taste filler in your brain quits working for you.
We pulled up to a nearly empty parking lot that should have given me a clue that something was amiss, but it didn't. I unloaded Don's wheelchair, parked him inside it and took them both up to the speech clinic. That's when it hit me that this was a 'reading day' for the students and there would be no therapy. Crap! We could have been relaxing at home after a killer run of days that all kept us busy from morning to night.
On the way home, we'd planned to stop at the gas station to get the gift certificates and as I was about to pull into Meijer when Don wanted to talk. Oh, God, his aphasia and my driving don't mix well. Thankfully, it didn't take a rocket scientist to figure out that his pulling on the steering wheel meant he'd changed his mind about where to get the gift certificates for his hunting guides. After briefly decoding Don's aphasia speak, I figured out we needed to continue on down the road to Applebee's. And they say women are the ones who can't make up their minds.
Thus ends another Tuesday adventure in the life of Ma and Pa Kettle down on the urban farm.
Jean Riva ©
October 21, 2007
Unfavorable weather or not, Don and his two guides saw a total of twenty deer and Don had the opportunity to draw on five but he didn't take the shots. Knowing Don as well as I do, he wouldn't shoot if he didn't think he had a clean and accurate shot which, of course, is true of all serious sportsmen.
From the stories Don's guides came back with you could tell they all had a genuinely good time. At one point, one of the guides said, they were laughing so hard he nearly pee his pants and they were laughing all day long. Our great-nephew was one of the guides and he said Don had them working every minute: jacket on, jacket off, snacks, water, urinal bottle, coffee, more snacks, gloves on, gloves off and then the constant game of twenty-one questions you need to play with someone who has a language disorder. "Aunt Jean," he said, "I don't know how you do this every day." They took lots of digital photos so I'm hoping to share some later when he sends me copies. The one posted with this entry was taken as we were waiting for Don's ride to pick him up before the hunt. Now there is a Christmas morning kind of face, don't you think?
The deer camp, this year, actually had the feel of a real deer camp---duh, it was real. What I mean is last year it was inside the sportsmen club but it was wall-to-wall wheelchairs and quite a comical thing to hear and watch when one of the guys near the back wall needed to go to the bathroom which was at the other end of the building. This year the Chapter of the Wild Turkey Federation who sponsored this event had pitched two large, old Army surplus tents. Nothing smells like old canvas. When I was a kid we spent summers on a lake and we kept a surplus tent pitched near a stream by the woods where all the lake kids played cowboy and Indians. Walking through those tents yesterday sure put me in a great mood. But it was such a warm night for Michigan that very few people hung out inside the canvas.
The deer camp also had a bonfire big enough for 12-14 people to sit around with others standing or sitting in a second tier behind them. The grills that they cooked dinner on were not far away. The local VFW and another organization, whose name escapes me, cooked for the hunters and the volunteers this year---one at lunch time and the other at dinner. I missed the to-die-for wild turkey chili this year; it was on the menu for lunchtime. It must have been quite a project to cook for the continuous stream of hungry people that wandered in and out of camp all day and evening.
'Michigan Out-of-Doors' came to film again this year. But I'm not sure it will be as all-encompassing the way last year's hunt was film. Last year was Michigan's first disability deer hunt. This year, I was told, they focused on filming the building of a disability hunting cart---kind of like a golf cart---and they wanted to follow it from the start of the building process through an actual hunt with a disabled hunter. The camera crew includes a woman who is the cutest little thing all decked out in her camouflage. We women have come a long way since my day when a college counselor once told me that the only career paths open to me, as a woman, were in nursing or teaching.
Oh, in case anyone is wondering how I spent my rare caregiver-free day. I did my normal Saturday errands but without Don in tow. Even though I love the guy dearly, it sure felt good to be alone for such a long stretch of time even if I was only picking up the weekly groceries, getting gas and recycling the papers. To mark this rare occasion, I bought myself a dozen roses and polished my finger nails. It just seemed like a woman should do something girlie on hunting day.
Now we can look forward to the community fund raiser coming up that helps pay for this event. (The disabled hunters don't pay a dime for their hunt.) A local church stepped forward to offer to do this and they raised $2,000 last year holding a dinner that included a silent auction and selling tickets on tons of great door prizes. The sheer number of volunteers who put their hearts and souls into making the disability deer hunt successful is a wonderful statement about society, don't you think?
Jean Riva ©
NOTE: On the second day of the hunt another two deer were brought in making it a total of four for the twenty-six disabled guys.
October 20, 2007
I really like the volunteers that he's hunting with. This morning when one of them picked Don up---he's actually a great-nephew, the son of his last year's guide/volunteer---Don wanted to give him the tour of his garage. I told Don he could do it later because they had to get moving. Then our great-nephew joked, "This isn't old time hunting, we have a schedule to keep." And they did. They had to meet a bunch of other the hunters and guides in a parking lot for coffee and donuts.
The photo is of all the stuff I packed and had ready for Don's day trip. There were 37 things on my check list to pack! Wheelchair bound hunters don't travel light.
I'll update again later, if I get another report, or on Sunday if I don't get another. I'm meeting them all at the deer camp at 7:00 for the dinner, camp fire and blue grass band.
Jean Riva ©
October 18, 2007
Monday was land therapy with one of Don's new physical therapists and as I suspected before I even met the guy that he is not as good as the one we just lost. That guy was an extraordinarily caring and smart PT. The new guy didn't push/challenge Don to go beyond where he'd gotten to last week. In fact, he allowed Don to dial it down which I know wouldn't have happened if he would have given Don a minute break and then asked him try the task again. For example, last week Don had done five steps up and back down using a standard height step. This week the new PT used a ½ height step and allowed Don to stop at four. Next Monday I'm going to have to step in and coach them both to go beyond where they left off today. I feel like we drew the card that says, "Train stalled on the tracks. No not advance forward."
Tuesday we went to the hearing center to get the verdict on Don's hearing accident on the firing range---to see if the steroids did any good. His hearing did come back a tiny bit but not enough to make us stand up and cheer. The worst of it is that even after turning up his hearing aids, Don is still having a little trouble understanding and the doctor said there could be some nerve damage which sometimes happens with damage due to loud noises. It could improve; it might stay this way forever. Well, crap! He doesn't need that on top of the stroke issues. Upon hearing all this at speech therapy, the professor had Don's student therapist slow things down. "Go back three spaces."
Wednesday we rolled the dice at the dentist office and both came out with good reports and no more appointments for expensive caps or other things that make you think you drew the card that says, "You made a bad investment. Pay the bank half the balance in your account."
Thursday (today) was Don's first aquatic pool therapy at the new location with the new therapist. She does nothing else but work in the water. The pool is a lot larger than the one Don's been using at the other facility but the water is still the therapeutic 92 degree. The whole place made me feel like I was a pizza baking in a brick-lined oven. But the therapist seems to know what she is doing and I didn't get the feeling that she is going to baby Don the way the Monday land therapist did. "Move forward two spaces."
Friday is the bi-monthly fish fry at the old people's club which---my gosh---if I even thought about cutting out of our schedule---which I did---it would be mean we drew the 'divorce card' and I'd have to pay the board game a huge, ugly fine. I had hoped for a quiet day at home. Oh, well, I just drew the 'weary traveler' card.
Saturday is the disability deer hunt! I got a call from the guide yesterday who will be working with Don and he wanted to know how many deer I wanted Don to bring home. I didn't realize that here in Michigan he could get as many as five doe. Holly Mother of Mary, Don better not shoot more than one unless he agrees ahead of time to donate the meat to the hunter's soup kitchen project. I do not want to draw the card of life that says I have to buy a deep freezer to house a bunch of meat I don't want to cook.
The guide said that when they set up the deer blind, they saw seventeen deer milling around the area and he thinks Don's chances of getting one are excellent. The only down side---at least for Don---is that the landowner only wants doe harvested from his property. I understand that's kind of common for people donating land for the disabled to hunt on but who will be charging other hunters to use once the regular firearms season opens. I'll blog Sunday and let you all know how the hunt turns out. Don will have a good time, I'm sure, even if they get rained out and have to hang around the deer camp all day drinking coffee and eating hot dogs. For him, male bonding time has been almost non-existent since the stroke. The hunt is like drawing the much sought after card, "Advance to Go. Collect $200."
Jean Riva ©
October 15, 2007
Then I learned “the secret” but it came after I’d neatly had a melt down after Don’s stroke. I’d been in the caregiver’s circus less than six months at the time. Don was still going to therapies four days a week, all afternoon, which of course I had to attend. I was also involved in selling off his heavy equipment that was parked all over four counties, and I was worried about the two houses we had sitting void of human inhabitants because we had to move into a wheelchair accessible apartment. Cash flow was a serious issue. Our futures were uncertain.
I don’t know who told me “the secret.” I could have read it in a book, I could have learned it from the Oprah Show---I don’t remember. But I do know it changed my life and I’m going to tell it to you. Free of charge, no strings attached. Drum roll, please. Here it is. Whenever you’re stressed out or mad over something going on in your life, ask yourself this question: is this a disaster or an inconvenience?
With those seven little words I learned to dial down my stress level and I do mean dial it down big time. A flat tire? No, it wasn’t a disaster. No one died, no one lost a limb because of it. A friend who didn’t show up when expected? A miscommunication---a disaster or inconvenience? It certainly doesn’t rate up there with losing your home to a flood or fire. By applying the is-this-a-disaster-or-an-inconvenience question to every situation that had the potential for raising my blood pressure or hurting my feelings, it helped get me through some very tough times. The bottom line is that very few things fall into the category of a disaster and very few inconveniences are worth trading in your live-in-the-moment card for a membership in the Doom and Gloom Club where they sit around for days after every miss-step in life stewing about what went wrong.
Jean Riva ©
P.S. The photo is of me from about the time Don and I met. See the previous blog entry for his circa 1970 photo.
October 13, 2007
Well, enough about them. The excitement is building here in our house. The hunting stuff is coming out of the closet, the deer scent has been purchased, Don's license and standing vehicle permit are sitting on the table, and today we took a little trip up to the sportsman club that will become the deer camp base next weekend. Last year it took us two trips to find the place which is tucked away in a blending of farmland, woods and state property. This year I drove right up to it. I will be going out to the place on the 20th about dark to join the hunters, volunteers and other hunters' spouses for the deer camp's wild game dinner and I wanted to refresh my memory for the landmarks along the way.
It was beautiful, sunny day today and it was nice being out in the country where the cornstalks were so close to the road that we could hear them talking with the wind. The farmers were busy cutting them down in the fields every where we looked and we saw three or four large fields full of plump pumpkins. Coming home we found a little town that was filled with little ghosts, goblins, pirates and ballerinas all trick-or-treating the merchants on Main Street. Thankfully I was able to get through the narrow, congested street without running over one of the costumed kids.
Little trips like this can't help but bring back memories of past vacations we've taken in the pre-stroke days---of times with alternating deep conversations and contented silences as farmland passed by the truck windows on our way out West each fall to go hunting. I can't image traveling long distances now like we used to do in the past with the silence of aphasia taking center stage. Now, a word here and there pointing out something of interest is the most I can hope for. Good conversation, sleeping in tents or in sleeping bags thrown in the back of truck, bumming around on the mountain roads are all things of the past. Memories like that can bring a twinge of sadness. But good things are coming our way so I try to stay focused on them. Things like the upcoming deer hunter where a bunch of great volunteers will make sure that Don has the best and safest hunt humanly possible for a wheelchair bound guy. Hey, I just had a thought: if aquatic and physical therapy keeps going as well as it is, maybe hunting season, 2008, I won't have to say I have a "wheelchair bound" husband any more. By the way, the photo of is Don on one of our first trips together.
Jean Riva ©
NOTE: I posted about the disability hunt on a stroke support site and I got some negative feedback. If you are offended by the practice of legal hunting, please read the replies I made there and have reposted here in the comment section.
October 12, 2007
The professor said that the reason they have Don paired with another client on Tuesdays---instead of the one-on-one speech therapy he's been getting up until this fall---is because they are preparing them both to get discharged from the program. I don't know if it will happen at the end of this semester or in the spring---I was afraid to ask, or maybe I wasn't ready to hear the answer yet. But either way, an end of an era is coming. I did ask if Don would be allowed to return to group therapy for as long as he wants to keep coming as I've always understood to be true for all their discharged clients. She said, "Of course he can" and she said that they are going to expand the group classes. From that remark, I'm guessing there will be a number of clients terminated at the end of this or the spring semester. There is quite a group of them who've been in the program a long time. None as long as Don, though.
On the way home I told Don what the professor had said and I added that this doesn't necessarily have to be a bad thing for him, that we can change our focus to improving his physical health. He can join the YMCA with me and we'll be free to get involved with fun activities at senior center. I asked him if he was disappointed with the news and his answer was, "No." Since the first of the semester, we both sort of saw this coming---I even verbalized my hunch that they were getting ready to discharge him. But I really thought he'd be more bummed out about it. He has not been happy about sharing the therapy hour and from his reaction to this news, I'd say the college's experiment to prepare clients for discharge with this step-down semester is working the way they want it to. With past clients who've been discharged cold turkey, it's often a very difficult and depressing transition for them. No client who is doing well wants to give up a good thing.
Today was Don's last land therapy with his current and great PT. It was exciting to watch. At the Monday land session Don did three steps up and down and this time it was five times up and down before he wiped out. All of them were stronger than his first attempt on Monday. There is one task he has do while laying on his back where Don pushes with his neglect leg as the PT keeps pressure on his foot with his shoulder. The PT said he was surprised at how much stronger Don's gotten in such a short time. I could even see it. What was interesting, too, is on the second set of pushes we told Don to talk to his neglect leg, tell it "MOVE!" When he did that with each push he got much more power behind his actions. God, I hope he gets good PT's at the new location. I can actually see Don not being so wheelchair dependent in the future.
Jean Riva ©
October 10, 2007
At one point during the session the PT had Don lying on his back with the help of two pool noodles, kicking his legs and bicycling. Boy, did he love that! He was making sounds like a contented kitten. At another point the PT had Don sitting on a ledge in the pool and he put a paddle with holes in it in Don's left hand and had him move it back and forth. He was watching to see if his right, neglect arm would mirror the pattern as we had Don talk to his arm and tell it, "Move!" You could barely see the movement but it was there! He had a medical term for what was happening but I can't remember it. It's so strange to think of Don's arm has having some imperceptible movement going on when it just hangs down like an arm on a rag doll and has been for 7 1/2 years. But he's been able to feel changes in the arm for the past six (?) months or so. He can't talk, of course, to explain how it feels but he'll pet his arm sometimes and make 'hummm' sounds like someone would do when they taste something good.
I am so unhappy that we're losing this PT after Friday! He's getting shifted back to another location 45 miles south of town. I guess he was just filling in for someone on maternity leave. We may have to drop out of group speech class to keep Don in aquatic therapy plus go 15 minutes north of town to another location. There is no one at the place we are currently going who is both strong enough and especially trained to work with stroke patients in the pool. I'm going to talk to the professor at the college tomorrow to see if it will count against Don for getting invited back next semester for the speech clinic if he opts out of the group class for the next six weeks. The rub with going to the other location is the stroke pool therapist only works on Tuesdays and Thursdays, the same days as Don's speech.
Jean Riva ©
October 8, 2007
Monday was just the opposite from Sunday with several things happening to thrill and excite. Okay, not thrilling as in a roller-coaster-at-Disney-Land kind of way, but thrilling in the stroke recovery world. We started the day with a physical therapy session (on land this time) for Don. The highlight of which was Don being asked to step up and back down on a step that was placed in front of a grab bar. This was a two man operation, to help Don the first time. He came close to wiping out and falling and would have if not for the fact that I was there with his wheelchair to catch him on his way down to the floor. His therapist had set a goal of three steps up and down but after that first attempt Don was a little scared to try again. But trooper that he is, after a little rest he was good to go again and the improvement between the first and second attempt was dramatic. By the third step up and down, Don was able to do it all on his own power with minimal help from any of us. Now, if that isn't something to thrill and excite I don't know what is.
In the afternoon Don got casted for a new AFO. When we told Don's PT this morning where we were going to get the AFO made he got puffed-up impressed and told us that the man who owns the place is known world-wide for his innovated carbon fiber braces. He holds the patent and people fly in from all over the world to get them made from him. And here we picked out the place because it was close to home. Who knew our good luck would come to this? What makes this AFO different from the old plastic type Don had before is that the foot part has springy action that is suppose to help with drop foot and the carbon fibers are, of course, very light weight. The top part that goes around the calf is one continuous piece; you slip your foot down through the opening in the top to put it on and it's suppose to help you to stand up straighter. We'll see. It's not going to be a put-it-on-oh-it's-a-miracle kind of thing. We'll have hard work to do---the PT, me and the brace guy---to get Don's calf muscles stretched back out after several years of atrophy.
This orthopedics place also owns a Giger biofeedback machine that the owner has offered to let our PT use on Don free of charge. There are only three in our town of well over 600,000 people. If we can pull this together I'll blog more about the technology later on. It looks interesting!
Jean Riva ©
October 6, 2007
In his wild youth Don was once sentenced by a judge to spend the summer mowing the grass in that very cemetery. He and some other boys messed around with the city's welcome sign and changed the 'rock' part of a word to 'fuck.' Now here it is fifty-two years later and the kids of this same tourist town are still making the front pages of the paper with pranks involving the city's welcome sign. Only this year's crops of kids were not as creative as their forerunners. They peeled part of the letters off the sign and threw them in the river, earning themselves a $700 fine in court. No vulgar or clever rearranging of letters or words. No graffiti proclaiming "Leroy was here!"
It's an odd statement about human nature but whenever we go to Don's class reunions someone is sure to bring up the 'fuck' for 'rock' exchange and they laugh about it as if it wasn't an act of vandalism. But you never hear people laughing over the teens featured in recent headlines who mess with the city sign. No, they get the head shakes with rhetorical questions like: "What's happening to kids these days?" and "Where were their parents?" I've even caught myself saying stuff like that, forgetting that history has a way of repeating itself. That's why it's good to wander around 'our' cemetery on a bright Saturday morning. It reminds us that nothing in life is ever truly new or unique.
Jean Riva ©
October 4, 2007
Hanging in a Easter egg colored noodle today, it briefly crossed my mind that those noodles are straddled by a lot of crotches but I figured that crotch kooties can't live long in water that is so strong with chemicals that a soapy shower can't wash their smell off my skin. And to think in my hay days I used to smell like Jean Patou's Joy perfume. "Jasmine, rose oils and other classic fragrances"---yes, so much better than the bouquet of chlorine, bromine and algaecide. Except for that brief moment of paranoia, I had a great time at my pool class today. All caregivers should sneak away in the wee hours of the morning to do something for her or his self. Remind me of that next winter when the Michigan snows are urging me to stay snuggled deep in my blankets.
Don started the afternoon out in the speech clinic waiting area the same way he has for the past few years: complaining to anyone who will listen to his aphasic tirade about a neglected plant that he wants someone to save from the sins of under fertilization and sporadic watering. It's not for lack of trying that he hasn't been able to convince someone to cut the thing back and give it a new start.
After the class, we were suppose to go out for dinner with four other couples---we go the first Thursday of every month---but Don had a run-in with his urine bottle before leaving the college and I was lucky enough to catch one of the other couples in the parking lot so I didn't have to go all the way the restaurant to let them know that we wouldn't be dining with them. The spouse of Don's classmate told me to just blot Don off, spray some perfume on him and go anyway. I thought about it. I really did. But at what point do you start throwing away a person's dignity? So I trusted my better judgment, took Don home, stopping for take-out oriental along the way. It was a good decision. By the time we got home he smelled a little ripe. Memo: start carrying an extra set of clothing in the car.
Jean Riva ©
October 3, 2007
The doctor, before giving us the prescription, was really starting to tick me off. It seemed like he wanted to hang the hearing issue on a cognitive hanger because of the stroke and he insisted on the cognitive test. So Don was put in a sound proof room where he couldn't read the lips of a person on a microphone who was asking him questions. Anyone who knows anything about Don's language disorders knows he can't come up with most words at will and I was afraid he'd fail the test, but he scored an 80%. The audiologist, who knows Don well---she's been seeing him for five years---sided with me that Don was no different cognitively now than when she saw him three months ago to fit him for his new aids. Finally the doctor explained that the steroids can have some nasty side effects with someone on Coumadin and he didn't want to give them to Don without first making sure the hearing loss wasn't caused by a brain disturbance instead of the mishaps on the firing range last weekend. My blood pressure would have liked it better if he had explained that in the beginning instead of letting me do a slow burn all that time.
After the appointment ended, we just barely had time to make it to the physical therapy building on the other end of town for Don's aquatic pool session. However, after seeing the nasty cut on Don's arm they decided it was too big and bloody and they'll have to while until it scabs over for him to get in with all the pool chemicals. He cut his neglect arm yesterday on the metal edge of a table the Mexican restaurant. Ouch! It's an inch and a half long and over a half inch wide, sliced the skin right off. Other than that, physical therapy went well. The PT spent most of the time with Don on a table and having him doing a variety of leg movements with the PT's help. It was hard stuff even for someone who hasn't been sitting in a wheelchair for the past 7 ½ years. But Don hung right in there---red face and all. People on the next block could probably hear me shouting out "Breathe, Don breathe!" in his ear.
Jean Riva ©
October 2, 2007
Yesterday was one of Don's blood lab and physical therapy days. After 7 1/2 years in a wheelchair, we were lucky to get his doctor to write a prescription to try aquatic therapy. The goal is not so much to get him walking again but to get him stronger so that he doesn't lose his ability to transfer on his own which has been on a downhill slide lately. If he loses that then life as we know it would change drastically. Don's only been to three therapy sessions but already I can see a difference. Yesterday, though, was rather comical due to Don's hearing issues caused by going to the riffle range over the weekend. I had to keep my lips within inches of his ear to repeat the instructions given by the PT. Thankfully we were able to get an appointment at the hearing center for tomorrow. I'm losing my voice from shouting.
After dropping Don back home this afternoon, I barely made it to the YMCA before the working people filled up the place. After a little treadmill and biking around and wishing I could be buff like some of the young ones in the place I was back home to get dinner.
This morning, before Don got up, I was back to the Y for an arthritis class in the pool. After a bone density test this summer, I was told I have the backbone of a twenty year old and the hips of an eighty year old. Yikes! So I've joined all the other out-of-shape seniors in the neighborhood who are trying to hold off the marching of time with a few do-se-do's in the pool. Gosh, that class was fun starting with the first bars of "The Bugle Boy from Company B" to the last notes of Jimmy Durante singing, "It's important to make someone happy, make one person happy, and you will be happy, too."
After my class I was back home to help Don in the shower so we could go off to one of his twice weekly speech classes. He's been going since his stroke (private pay) to a speech/language pathology clinic at a near-by college.
On the way home we stopped for what was suppose to be a quiet little meal at a Mexican place. A tipped-over full glass of water, a salsa decorated shoe, an orange stained pant leg, a bloody arm and a thousand napkins later---oops!---I was ready to come home and chili out with a few Planters peanut butter cookies and a cup of Constant Comment. Some moments just call for some comfort food. And Don? He's asleep in his Lazy Boy. Our old-people-on-the-move routine worn him right out today.
Jean Riva ©
Detailed descriptions of Don's physical therapies can be found at 'My Yahoo 360 Page' linked in the column to the right. Once there, click the tag cloud 'aquatic therapy.' Documentation of several years of past speech classes can be found at the 'Aphasia Decoder's Diary' also linked in the column to the right.
September 30, 2007
My husband, Don, went on
This weekend was the sight-in day for the second annual disability deer hunt that is sponsored by one of the chapters of the Wheelin' Sportsmen, NWTF. This time they have twenty-eight wheelchair bound guys signed up. At theses sight-in days, the volunteers help the disabled hunters find just the right combination of gun, tripod and other disability friendly aids to make it possible to hunt from either a blind or an all-terrain vehicle, using a special 'standing vehicle' license. The volunteers who put this well organized hunt together really understand what it means to life-long hunters to return to the woods. I can't say enough good things about these men and women.
My husband will be using a blind on hunting day that will be set up and ready for him at day break. Along with the blind comes a volunteer guide who helps him handle the gun, get to and from the blind and whatever else he'll need during the day. The blinds even have special wood floors to make it easier for the wheelchairs. If a deer is brought down, the guide calls a tracking team who goes after the animal, field dresses it, and brings it back to a brag pole at base came. Eventually another set of volunteers gets all the animals to a processor. All of this is free of charge to the disabled hunter. Later on I'll post contact information for the sponsoring organization. They're nation wide with many state chapters.
Unfortunately, as good as the volunteers are, no one made sure that Don's ear plugs were properly put in and he came home with signification hearing loss from the two hours on the shooting range. Monday I have to call the audiologist to see what can be done. Hopefully, just turning up his brand new hearing aids will do the trick. In the caregiver world, it's always two steps forward and one step back. As caregivers we want and need to trust others with our care recipients but then something like this happens and you're reminded of why that is SO hard to do....
Jean Riva ©