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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Lost at Yahoo Questions and Answers

It's embarrassing that it's taken me so long to update this blog. I have but one excuse. I've become seriously addicted to answering questions at Yahoo. Oh, yes, it's like eating pop corn in a movie theater---so hard to stop the mindless action! No matter how fast you can type, it's humanly impossible to keep up with the endless and daunting flow of questions on everything from politics to relationships to disabilities to you name it. In a short period of time I've racked up 7,146 points and replied to 1,604 questions. It's like playing the slots, hoping your answers will get picked for the extra ten points as THEE best. My time on the computer goes so fast at Yahoo. But all good things---and I use that term lightly here---must come to an end. Or in other words, I've decided it's time that I get back my pre-Yahoo life where I spend my computer differently, where I'm not so entranced staring at the monitor that I don't even want to get up to go to the bathroom. Help! Is there a ten step program for people hooked on Yahoo Questions and Answers?

When Don came home from the hospital (after his aorta aneurysm surgery) he bounced back fairly fast. He's had his post-opt CAT scan and blood work done and all looks well. We still need to get him started back up with his exercise program. He's lost most---but not all---of the improvements he'd gained through the aquatic pool and land therapy this fall. Thankfully, though, we did that work to build up his core body strength before the surgery. Without it he would have had a much harder time in the hospital.

I've slowed down since the surgery. I guess those crazy-busy months we've had beforehand finally caught up with me. I'm worn out but slowly rejuvenating, coming out of my fog. If the temperature outside would just get warmer, that would help. I'm so tired of being cold. But that's another story and I've been bitching long enough. I just wanted to let everyone know that I'm back and I plan to stay. In a few days I'll have some exciting news to share. Come back then and I'll tell you all about it.…..©

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Lucky Saturday

Finally, Don is home from the hospital...but with strings. They've signed him up for home physical therapy to get him back to base line. Base for him is independent transfers from his wheelchair to where ever and back. He's not quite there yet---I need to stand by to be sure he's safe---but I'm hoping we can build up his strength rather fast, given that he was doing so well after this fall's round of aquatic pool and land therapy.

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.

Day Seven

Strange how quickly we can fall into different patterns in life. Don's been in the hospital seven days now and already my days are in a rhythm that dovetails with his. By eight o'clock I'm up to shower and have a Slim-Fast for breakfast before taking off for the hospital on the other end of town. I stop for a Starbucks's caramel macchiato when I'm almost there and carry it into the hospital and by the time I've reached the fifth floor it's gone. The empty cup gets tossed in the waste basket by the guest lounge but not before reading the bit of writing that is printed on the side. Today it said: "Secret santas and soup-kitchen elves walk amongst us. Are you one of them? If so, we'd just like to say, 'Way to go.' That's what the season is all about." I'm not one of those but I second that thought although I was slightly disappointed that their usual bit of philosophy got set aside for that holiday message. Sometimes their mystic words stay with me all day long.

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 ©

Christmas: Past, Present and Future

It's Christmas Eve and feelings of happiness that Don's aorta aneurysm surgery was successful are intermingled with fleeting feelings of fear and sadness. Fear of a future filled with loneliness should Don, at some point, cease to be before my time on earth has ended. Sad at past loses and flowing tears.

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 ©

Success!

Don was on the operating table for four hours, in recovery for two and in ICU for four hours after that. He came through the aorta aneurysm repair very well, with no complications, and when I left the hospital tonight he seemed to be back to his old personality. He'll be in the hospital at least until Monday morning which is a couple of extra days more than they usually keep people when they do the stent through the groin. But he has so many stroke related issues plus the heart A-fib that the surgeon wants to be careful he doesn't fall and undo his work. Plus his INR blood work has to check out okay for them to release him, which it doesn't right now.

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.

Houston, We Have a Date!

Don's aorta aneurysm is going to be on December 21st. Between now and then we have four appointments to get the pre-op stuff out of the way which includes: an adenosine myocaridal perfusion stress test, an echocardiogram, a surgical nurse interview, a chest x-ray, blood work, and an appointment at Don's internist. We're told the surgery is pretty safe when not done in an emergency situation, like repairing a weak and bulging spot in a garden hose. In an emergency, should the aneurysm burst, then you have a 40% chance of dying before getting to the hospital and a whole host of grave issues to deal with if you do make it to the hospital.

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!

Jean

Quick Update

We've had our lives on hold waiting for Don's aorta aneurysm surgery date. The hold up has been that the cardiologist was out of town over Thanksgiving and wasn't available to give clearance for the surgery. Once back, he ordered some tests that are scheduled for the 10th so we know that Don will not get on the surgical schedule before those are read. It's looking more and more like Don will be in the hospital uncomfortably close to Christmas. I hate the waiting around! I hate the fact that while we've been waiting winter has set in! I hate the fact that the new hospital is on the other end of town and I'm scared to drive that far in the winter! I can't wait until this is over.

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.

Jean

Two Steps Forward, One Back

Don's new carbon fiber brace came on Monday and it was short of amazing how well he could walk in it while getting the final fitting tweaked. His toe didn't drag and get caught on the floor and his heel was hitting the floor first which I haven't seen since before his stroke. He was able to stay standing for longer periods. I was so pumped until…

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 ©