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Tuesday, August 30, 2011

The Cartoonist He Was

Thought I'd lighten up the mood here. This is another one of Bob's cartoons and one of my favorites.
The Witness Protection Program
undergoes another budget cut.

Saturday, August 27, 2011

Walking at Daybreak

It's daybreak and I'm walking with Boomer a few blocks from home. The sky is just beginning to turn from black to gray when I notice this house. A simple house. A common kind of house built in the 1940's. Single story. Gabled foyer with an arched oak front door with a high little window. The outside light is still burning. The newspaper lies folded near the step. The lawn is soft with morning dew and neatly manicured. Pots of inpatients bloom near the doorway. And it all looks so.... so normal.

I can imagine someone coming out that front door. Wearing slippers and a robe. Retrieving that morning paper. Retreating back inside for a cup of coffee and a leisurely read....

And I stand there with Boomer. Just staring at that door. Remembering.

Remembering the time when the paper laid by our front step and the lawn was neatly manicured and flowers bloomed in pots on our front porch. When it was me who slipped out in slippers and a robe and snatched the morning paper and then spent a leisurely hour drinking coffee and reading the paper, in bed,  with Bob.

He always grabbed the front page. I started with the Arts & Literature section. He read every article. Me, I skimmed a lot. He did the crossword. I read the comics.

Right now, Bob is singing softly in his hospital bed. Singing to a tune on the radio. I write this while I wait for Chris to come over, so that I can rush to the pharmacy to drop off a prescription then to the grocery store, then back to the pharmacy and then home again. Ripley sits on my computer printer. Out the window there is no newspaper on our doorstep. The lawn is overgrown. The flower pots are empty. Litter blows down the sidewalk.

And I think of that other house. The normal one. And sometimes I just wish.... I wish... I wish...

Wednesday, August 24, 2011

Bob's Stroke Story

I recently realized that I haven't covered the strange and terrible story of how Bob had his stroke in this blog.  I've touched on it a bit, but have not gone into all the details. Since I have nothing new to report (we are doing our therapy, still dealing urinary problems), I thought I'd take a minute to cover it here.

In September of last year, Bob went into the hospital to have his hernia repaired. As part of the preparation for surgery, he went off his warfarin. (He had suffered a smaller stroke in 2003 and was on warfarin since then. That stroke left him with only some fine motor issues with his right hand.) This was the fourth time he had hernia surgery in the same spot and this time the doctors put a sort of mesh support in the area in order to prevent the hernia from once again recurring. Because the procedure was more intense than usual, they kept him in the hospital for several days for observation after the surgery. During that time, Bob suffered several TIA's (mini-strokes) and an ultrasound was done in which they found that his carotid arteries on both sides were 90% or more blocked. Initially, the doctors wanted to rush him into immediate surgery, but after much discussion, it was decided that he should wait until his hernia repair was completely healed. He was sent home, told to take it easy and the first of what was supposed to be two surgeries was scheduled for October.

The surgery is called a "carotid endarerectomy" and consists of surgically opening up the blocked carotid artery and cleaning it out and then patching it with a bovine patch. This is a high risk surgery, but the doctor involved performs 100's of these each year and is considered one of the best in the field. We were told that the risk was that part of the clot could break off during surgery and cause a stroke while the patient was being operated on. We were told the chance of this happening was about 10% but that if left alone, Bob had a 40-50% chance of having a major stroke in the near future. With those odds, Bob opted to have the procedure done. It was done on October 21st of last year. The surgery went well. Bob woke up from the procedure, talking and moving, and the surgery was labeled a success.

I spent a couple hours with Bob in ICU after the surgery. He was groggy but seemed fine, to the point of complaining about the supper tray which was a "liquid diet" and he said he was hungry and wanted something more. After he ate, he said he was tired and I, too, was exhausted so decided to go home and once there, immediately collapsed into bed. At 9:00 p.m. that night, the phone rang and woke me up. I heard Bob's voice on the answering machine: "Hey Sweets, it's me" and I jumped up to answer it. He told me he was feeling fine and just called to say goodnight and to remind me to bring his razor and his watch in the morning. We talked for about a half hour. Little did I know, that would be the last time I would hear him speaking clearly...

I arrived in ICU the next morning at around 9:00 a.m. Bob's room was dark, but the first thing I noticed was that the chair by his bedside was gone, so I went to look for a chair. I finally got one of the aides to bring a chair in and as I was putting my bags down (razor, watch, etc.) the nurse came in with Bob's breakfast tray. It was then I noticed something was terribly wrong.

The nurse was trying to position Bob to sit up in bed and he kept sliding down. He seemed to have no control over the right side of his body. He was trying to talk, but everything was coming out garbled. The nurse sort of propped him up and left the room and I, first, tried to shake Bob to "wake him up" but I noticed the side of his face seemed to be drooping and large soggy pill fell out of his mouth, so I ran after the nurse telling her that something was wrong with my husband. I handed her the soggy pill and she tossed it in the garbage. She said to me, "Isn't your husband always like that?"

Then, she said, "I thought he didn't look right when I came in."

She went to page the doctor, who was on the floor and came in pretty quickly. The doctor quickly assessed Bob, said "Something is wrong. This is highly unusual." and left the room to put in some orders. The nurse came back in to hang an IV bag and as she was getting the IV set up, she turned to me and asked if I wanted the scissors to take home, because they were just going to throw them out and they were sort handy little scissors. I don't know why, I still remember this. I guess because I thought it so bizarre, that she was talking about scissors, and I was freaking out thinking that Bob was possibly dying before my eyes and she handed me the scissors. I stood there holding this pair of scissors really not knowing what to do with them. I think I put the scissors on the cupboard. Just left them there.

Then a portable ultrasound was brought up and a tech did a quick ultrasound on Bob. Then papers were thrust in front of me to sign and Bob loaded on a gurney and sped away for what I was told would be an emergency surgery. And I was told to wait in the surgery waiting room. It was now around 10:30 a.m.

I waited in the room for what seemed like a thousand years. At one point, I asked the volunteer who was staffing the desk if she knew what was happening with my husband. Was he in surgery? Was he out? She couldn't find his name on the list because it was an emergency situation so she asked who the doctor was and when I told her, a couple sitting in the room told me that that particular doctor was operating on their mother at the instant and had been operating on her since about 10:30. So Bob was still waiting for the surgery to begin. He came out of surgery around 2:30 p.m. He was alert for a little while then slipped into a coma.

Later I was told that the carotid artery that had been operated on the day before and had been cleaned out had re-clotted. That the clot was so long it ran from Bob's heart to his brain. That the neurologist did not know how long Bob's brain had been without oxygen and it could only be pinpointed sometime between 9:30 p.m. when I hung up the phone and 9:00 a.m. when I found him in the morning. That "too much time" had passed without oxygen to his brain.

The initial CAT scans showed 2/3 of his entire brain damaged, the damage having crossed the midline. Initially I was told that if he woke up, he would be paralyzed from the neck down. That he would never breathe again on his own. That they weren't even sure if all his organs would operate independently. That I should prepare myself to "pull the plug".

A hematologist was brought in and test results revealed that Bob's blood is unnaturally thick. That this was the cause of the re-clotting. This was quite possibly the cause of his first stroke in 2003. Probably the cause of his TIA's after hernia surgery as he was off the warfarin. That this is an unusual and most likely a genetic, hereditary problem.

He was in a coma-like state for the first couple of weeks. After he came to, another CAT scan showed that the initial damage had receded, though still, 80% of the left hemisphere of his brain was damaged. The doctors called this a miracle. Many doctors came to view him and look at his records as they had heard about this "miracle man".

He spent a total of three months hospitalized, fighting off several brain bleeds and various infections and two bouts of pneumonia. While hospitalized, he suffered a pulmonary embolism and a separate ischemic eye stroke which left him blind in his left eye. The doctors say this was caused by his "thick blood" but they didn't want to put him on a blood thinner until they were sure his brain had stopped bleeding.

And he's home now. On blood thinners. His other carotid artery is still blocked, but we're certainly not about to have that operated on..... And he's doing better than anyone ever imagined. Even if his recovery progress is "slow" compared to other stroke survivors.

So that's the story of Bob's stroke. Sometimes, I have to remind myself of this story, because, well... Just because....

Saturday, August 20, 2011


Deep sigh.... I have just spent the most relaxing few days that I've experienced in--I don't know how long.

My dear friend, Jenn, came to visit. Jenn and I go way back. We met at a Writer's Retreat long before Bob and I were married. How good it was to see an old friend. And to get out of the house. Lord almighty, did you know? There really is a world outside of the Pink House. Wow.

On Wednesday, Chris (and her great-grandson, Troy) sat with Bob so that Jenn and I could go out to lunch. Just getting in a car, letting someone else drive, was such a pleasure. We went to a bayside restaurant so we could look out at the water. Bob and I live only 10 minutes from the Gulf and only a few miles from the bay, but I haven't been by the waterside since Bob was in the hospital (the hospital being located on the intercoastal waterway). Such a pleasure just to sit and talk and look out upon the water.....

On Thursday, we spent the day with Bob, doing therapy, which was fun for all of us. Bob enjoyed the attention and I enjoyed the company and I think Jenn learned a thing or two about stroke therapy and also shared some "fresh eyes" advice, which I appreciated. The three of us then played Scrabble and Go Fish, a challenge for Bob. A good challenge. Heck, he won.....

And Friday, when Jenn was due to leave, she asked if I wanted to go to a local art museum with her in the morning. Chris, again, volunteered to sit with Bob, but on Friday morning Chris was not feeling well and I was quite uncomfortable leaving her, but she insisted, practically pushed us out the door, so we went to see a highly beautiful and strange exhibition of blown glass. One dark room featured a life size wooden row boat brimming with colorful glass balls. The boat floated on a glass floor, its reflection upside down underneath it. It was a breathtaking sight, so still and silent, strangely calming and weirdly intimate. Sort of a metaphor of our life right now, as I feel so often adrift since the therapists have abandoned us.....

We came back early. Bob needed meds and I was worried, too, as Chris was feeling poorly. But the minute we drove up to the house, Chris was yelling from the front porch for us "to get hell outta here and go back out!" She was feeling better, Bob was asleep, so I slipped him the medication and we went back out for a leisurely lunch at a fancy hotel resort, sitting at a table watching the tourists splashing in the hotel pool complete with a waterfall.  Aaaaahh.... what a life.

Well, it's back to reality today. But I am feeling quite refreshed and up to the usual challenges. Thank you, Jenn and Chris.

Monday, August 15, 2011

Nurse Jekyll & Ms. Hyde

I swear sometimes I feel as if I've been split in two. Developed two personalities--a regular Dr. Jekyll and Mr. Hyde thing going on here. Make that Nurse Jekyll and Ms. Hyde.

It was a rotten weekend to say the least. Bob: cranky, uncooperative, needy. He spent 4 hours and 20 minutes clutching the urinal on Saturday, refusing to do any therapy and I got so fed up, I just went and spent the afternoon scrubbing the bathroom working off my angst. And his peg tube keeps clogging. I had to take him back to see a doctor about a week ago because the darn thing was clogged up again. They managed to get it flowing again but since it's been constantly reclogging and even when it's open, it's running slow as heck (a tube feed that used to take 10-15 minutes now takes 30 minutes) and this is so frustrating. I have another new arsenal of weapons including a peg tube brush and Adolph's meat tenderizer yet still... Then he's developed this weird fixation with his bottom which is always "wet" or "yuck" and no matter how many times I change him, wash him, wipe him off, powder him, it's still "yuck" to the point where I find myself just snapping at him. Like I've developed a "bitch switch" and there it goes Snap! and I have turned into this screaming monster that I don't even recognize.

Lord, some days, I just want to run away from home.....

Last night, the bitch switch snapped again and I really read him the riot act. Because sometimes he just pushes me too far and he's so darn needy and whiney and nothing I do is good enough, so I told him that if he wasn't careful I'd end up in the looney bin because I just can't take this anymore and he'd have to go to a nursing home and where would we be then? I went on and on, lord, even about the fact that he never thanks me for all I do and when he was in the hospital he always thanked those nurses, always squeezed their hands and they all thought he was so charming, so why does he treat me like some kind of slave?

Well, this morning after he had a bowel movement and I cleaned him up, he actually gave me a little salute and a smile--his way of saying thanks when he can't find the words. Does my heart good.

I do have something to look forward to his week. My dear friend, Jenn, is coming to visit. This is the first visitor we've had since Bob has been home and I am so looking forward to it. I think it will do Bob a world of good too, cheer him up a bit, as I'm sure he gets lonely and bored and frustrated with just me around. And I am planning to get out of here for a few hours in the afternoon, my neighbor (Chris) volunteered to sit with Bob, so that Jenn and I can go out and just have some fun. It's been a long time since I've been out of this house just to have some fun. I think the last time was in November....

Friday, August 12, 2011

A Little Improvement in His Movement

For the past few weeks, I have had this silent fear that Bob is not improving. I say "silent" because I do not voice it, I don't even try to think about it too much. Of course, the latter is impossible. Try as I might, the thought creeps up that he's not improving, that he's really hit the wall, like PT said. That's he's stuck and is never going to get any better. And with that thought, a thousand other thoughts revolving around the fact that I don't know if I can keep this up forever! Yikes.

So I am very happy and quite relieved to report a little improvement these past two days. For the past six months, we've been doing a series of leg exercises (in bed) and, of course, Bob can do the exercises very well with his left leg but not so good with his right. One of the exercises is to lift his leg out sideways and then back again. His right leg, he could always move out to the side (in a sort of jerky, clunky fashion) but never back again, so I would have to lift his leg and place his leg back in the starting position. On Wednesday,  he astounded me by being able to pull his right leg back for the first time ever. And on Thursday, he repeated this (so I knew it wasn't a "fluke"!) for nearly all of the 20 repetitions.

All I can say is Thank Goodness. Thank goodness. Thank goodness for that.

Wednesday, August 10, 2011

Just Say No To Apraxia

a-prax-i-a:  the inability to perform particular 
purposive actions as the result of brain damage

I remember when Bob was first diagnosed with apraxia. This particular diagnosis came from the Speech Therapist at Outpatient Rehab, but also OT and PT seemed to be on board. Every time Bob failed to follow directions, all of the therapists would shrug and shake their heads and say It's his apraxia.

I also remember having my doubts. Are you sure? I would ask. I remember the ST giving me this look that could only be interpreted as I'm the one with the degree and you're an idiot.... Then she'd demonstrate by asking Bob to do something, such as:

ST: "Point to your nose."

Bob stares at her blankly.

ST: "Bob? Can you point to your nose?"

Bob: "Yes."

ST: "OK, do it. Point to your nose."

Bob: "OK" but he does not do it.

ST: "Do you understand what I'm asking you to do?"

Bob: "Yes." But he still doesn't do it.

ST (to me): "See? He understands but he can't do it."

Me: Hmmmmm.....

And on and on, all the therapists in unison: "It's so hard, especially with his apraxia..." every time Bob had difficulty following directions. Me, I still had my doubts. I mean, was it so much that he couldn't control his movements or was it that he just didn't understand the directions?

Yesterday, during our at-home Speech Therapy, I was looking through my jumbled mass of worksheets (and really, I need to get more organized! aargh...) and I ran across a bunch of sheets on apraxia. So, I thought, what the heck and I asked him, in the following order, to point to his eyes, point to his ears, point to his nose, point to his hair and point to his chin.

And do you know what? He did them all, except the chin. No hesitation at all. When he didn't point to his chin, I showed him by pointing to my own chin and saying "This is a chin." Then he did it. He very well could do it.

So, there you have it. Apraxia, my foot. The whole problem, all along, has been the words. It's not that he can't "perform the action," it's that he doesn't always understand the directions, i.e. he doesn't understand the meaning of the words. Just as I thought. Hmmmm.

Tuesday, August 9, 2011

Back on our Feet

It took a little gumption, but we are back on our feet and walking the hallway rail once again. Only four times yesterday, not even close to our former record of nine times, but it's a start. Bob, I could tell, was very wary about it at first. 

Meanwhile, I've been in a quandary as to what to do about Speech Therapy. The more I look at that video (two posts down), the more I realize that his speaking is not improving, regardless of what other people think. So the question comes down to this: do we continue doing the same speech therapy exercises if they don't seem to be working? Or is it a matter of repetition and practice? I just don't know.... 

I've been to the library and pretty much exhausted all local books on aphasia etc. and am down to hunting sources on the Internet. I did discover that Bob has Broca's aphasia, that opposed to Wernicke's, which is actually good because prognosis for improvement is better with Broca's than the other. (Why no doctor or therapist ever pointed this out to me, I don't know.) Although, I'm not finding much info on treatments (except "buy our video for $699.00" etc.) Bob's main problems are not being able to find the "right word", not being able name objects/things, and not being able to speak in complete sentences. I read somewhere that Broca's aphasia is considered to have progressed when it becomes anomic ("anomic" meaning the inability to name objects), but does that mean this ability will never come back?

I sometimes feel like we've exhausted flash cards. I mean, how many times do you show him a picture of a giraffe and he still does not know what it is before you give up? And just how important is it to know what a giraffe is, anyway? He certainly won't be meeting one of those on the street. When I get him dressed in the morning, I always quiz him by holding up his socks and asking him what they are called. I do this with each article of clothing and this past week, two days in a row, he remembered "socks" and "pants" and I was thrilled, but yesterday, once again, he did not have a clue as to which were the socks, pants or shirt....  aaargh. I keep trying.

I did run into one thing in the packet of info the Speech Therapist gave me. A worksheet on "articulation of consonants, increasing length and complexity". I saw this and thought: what's this? They never did this before. Because everything else in the packet is pretty much stuff they were doing in therapy. The therapy is for speech repetition and goes like this:

She is fishing.

Some of the examples were pretty stupid, i.e.

Her name is Vicky.

I spent a good deal of yesterday morning going through the dictionary looking for words I could use and making up my own sheets. I think it helps if the practice work can be related to, i.e.:

Boomer is barking.


The neighbor was murdered.


The house is dusty.

Oh well. We'll see if this works/helps him. Right now I have to run. So:

This post is ending.

Friday, August 5, 2011

A Fall In The Hall

Yesterday afternoon, we were just starting our walking practice using the rail in the hallway and Bob lost his balance. And he fell.

Worst fears suddenly coming true.

It was slow fall. I had one hand on his gait belt, which he has to wear high up because of the peg tube in his belly, so the belt is under his arm pits. My other hand was on the wheelchair. And I must admit I was a bit distracted because I had noticed his knee brace had come undone, one velcro strap was loose. So I was thinking about the brace and that I needed to adjust it, when he began to slide. The right leg just giving out, slipping out from under him. And he was falling forward, away from me and the wheelchair, as I was slightly behind him (our hallway being somewhat narrow).  I managed to pull up on the gait belt and he was still hanging onto the rail with his left hand, but still, he went down. Gently though, I must admit I did manage to break his fall, so it was more of a gentle slide onto the floor than a fall. He was not hurt. Can't say that much about me.

So there Bob was---flat out on the floor. I'm freaking out, because, oh crap, what do I do now? After checking to make sure he wasn't hurt, I tried to lift him back up. He cannot sit up by himself, so was lying there, quite stiff, like an unbendable board. I couldn't lift him. Not at all. He's 6'3" and weighs about 185 and I'm 5'4" and weigh---well, let's just say---much less than him. I did try. I did manage to pull him into a sitting position, got his back against the wall, and left him leaning there.

First, I ran outside. We have a neighbor across the street, a nice guy who once fixed our chimney cap when it blew off in a storm and he had told me that if I ever needed help to come get him. But he wasn't home. Next, I called Chris, not that she'd be much help in this case (she's shorter than me and weighs about 98 lbs. and uses a power wheelchair, too boot) but she has several men friends and I was hoping maybe someone was around who could help. Chris was alone with her great grandson, who's eight years old. She told me to hang on and she'd check with the neighbors to see if anyone was around who could help.

Meanwhile, Bob, who was leaning against the wall, begins to slide down onto the floor again. I'm back in the hallway, trying to prop him up against my legs, hanging onto his gait belt when Chris arrives with a neighbor guy, who, unfortunately, is afraid of dogs.

Now, Boomer is a good dog, but he's loud and tall and weighs about 100 lbs. being part Great Dane and part German Shepherd and so he can be intimidating. Of course, with all the excitement, Boomer is barking. The neighbor guy won't come in the house. Chris comes into the house and manages to get Boomer into the back bedroom and shut the door so that the neighbor will come in. The neighbor tries to lift Bob up from the floor, but he can't do it either. Bob is just so stiff and heavy. He manages to get Bob up halfway to the wheelchair but it's like trying to bend a 2x4 into a wheelchair and it's not working and Bob starts sliding back toward the floor and I grab the gait belt from behind and just then, Boomer, who is too smart for his own good, opens the bedroom door and comes out, barking like a mad hound from hell, freaking the neighbor out of his wits, who drops Bob and I am left holding Bob up by the gait belt, hanging on for dear life, while Chris runs to corral Boomer and I try to calm the neighbor down so that he will grab Bob before he hits the floor again. Chris manages to get Boomer back in the bedroom and slam the door and the neighbor grabs Bob's legs and together, me lifting Bob from under his armpits and the neighbor lifting Bob's legs, we manage to almost get Bob back into the wheelchair when Boomer breaks out of the bedroom again and Chris is screaming at the dog, and the dog is barking, and the neighbor is screaming and practically wetting his pants and he lets go of Bob, and Bob is sliding again to the floor and Chris manages to chase Boomer back into the bedroom and slams the door and this time she pulls the clothes hamper in front of the bedroom door and Bob is back on the floor and Chris screams at me "HOW THE HELL IS HE DOING THAT?" meaning Boomer, not Bob.

(I'll tell you how. Boomer, who like I said, is a smart dog, knows how to put his mouth around a doorknob and turn it and then pull it toward him and open a door. I have seen him do this. Truly, I have.)

Finally, the neighbor and I get Bob back into the wheelchair and I thank this guy profusely and he leaves quickly (probably worried that the Houdini-dog will escape again) but Chris stays with me until I get Bob back into bed as she can tell that I am truly freaked out by the whole incident.

Today, I am quite stiff and sore. I pulled some muscles in my arm and shoulder and could barely move my arm this morning when I woke up. All I can say, is thank goodness we have nothing on our agenda today and I plan to take it easy as I have had enough excitement for awhile.....

Thursday, August 4, 2011

Bob Speaks Out -- A Video

Every so often someone will tell me that Bob's speech has improved. It's hard for me to tell, being with him 24/7, so I thought I'd start documenting his speaking abilities. The above video taken yesterday. He still has a tendency to sing if he can't get the words out. Much is still garbled. But better, perhaps, than the following video....

Below is a video of his speech therapy session with his at-home speech therapist, taken in February.

I think I will try to video him at least once a month from now on.

Note: If you have trouble hearing the video, click on the video once it starts playing. That will take you directly to YouTube where sound and picture quality should be better.