December 29, 2007

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.

December 27, 2007

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 ©

December 24, 2007

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 ©

December 21, 2007


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.

December 19, 2007

Exciting News

I just found out that one of my aphasia caregiver articles has been nominated for the Best Text Article of 2007 on Associated Content! It's caregiver humor piece and I really needed this exciting news right now. The site publishes thousands of articles and I don't know how much of a chance I have of winning, but it doesn't matter. The nomination feels great, especially now. If you want to read it you can find it by looking in the right hand column (under 'Have you Read...'). Look for, The Shower Stall Mystery.

December 6, 2007

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!


December 1, 2007

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.