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Monday, November 28, 2011

He's Drawing Again!

It's taken some time, and a lot of coaxing from me, but finally Bob has put pencil to paper and begun to draw again. The first time I put an artist's sketchbook in his hand, all he did was write his name over and over, which--don't get me wrong--is good practice, but not quite what I had in mind. When I asked him why he was writing his name and not drawing a picture, and he told me, "I'm progressing."

Today, I handed him the sketchbook and I asked him, specifically, to draw me a picture of what is was like to have aphasia. Of what his brain/mind felt like, to him.

This is what he came up with:
Aphasia Mind (click to enlarge)

Mind you, he is drawing with his left (non-dominant) hand.

"The Words" (click to enlarge)
He then asked me to turn the page and he drew another one, this one he called "The Words"....He often uses the phrase "the words" when he cannot come up with the right word. He will hit himself on the forehead and say, "the words, the words!" when he can't find the right word....  OK, I know this one looks a little, um... sensual.... but...

Of course, he's nowhere near what he used to do, i.e.:
One of Bob's Drawings, pre-stroke-- Pen & Ink

But I am so happy he is drawing and using his creativity again!!

Thursday, November 24, 2011

Counting Our Blessings

Today is Thanksgiving and although there is no turkey in the oven here at The Pink House (Bob can't eat, so why bother), it seems time to take stock and count our blessings.

Last year, Bob and I spent Thanksgiving at Kindred Hospital (a specialty critical-care hospital for pulmonary patients), where he was daily "shaken" by the airway vest machine in order to breakup the congestion in his lungs caused by pneumonia. A year ago, I did not blog but wrote in a conventional journal. Here is an entry from back then:

November 21, 2010  At Bob's bedside in ICU still. Oh, this is so hard. Today is the one month anniversary of that blasted stroke. 

The nurse said he said his name "Bob" to her!

Still he looks like shit.

Some days I would like to crawl in a hole and die. I don't know what to do. People say don't go there everyday (it's so depressing, he doesn't respond..) but what would I do? Sit home, stare at the walls? I know there is cleaning & the yard is a mess--but I have no energy for that. None at all.

Today, I went for a walk around this place--there is a strange boarded-up building here--3 stories, gray stucco, a sort of monolithic tower that rises up from the ground like a monster--dreadful looking. A place where one might imagine cruel experiments happening inside. The main door is padlocked and an abandoned parking lot, choked with weeds, near it with spots marked DR TEIGMANN (4 spots for one doctor or four doctors with the same name--a family of mad scientists, I imagine.) Also there is what looks like an old heliport surrounded by mangroves, their long tentacle roots reaching out, into the dark waters of the bay.

A frightening building, really, one's imagination can run wild with it.

This whole place is frightening--every patient is on a life support machine. Death, daily walks these halls... Bob would freak out, if he knew.

So now, it's a year later, and looking back, I know I have many, many things to be grateful for but most of all, that Bob is safe home with me.

Saturday, November 19, 2011

Bob Speaks Out, Video #2

Thought it was time to tape Bob speaking again and compare to the last one. This was taped yesterday, 13 months post-stroke.
Click on the YouTube icon after it starts to take you directly to YouTube for better picture/sound quality. Then compare to this one taken in August, 9 months post-stroke.
I do believe I see some improvement especially in his overall alertness, comprehension and he's speaking more clearly, though, he still tends to goof around too much! Speaking of "alertness", I had to retake the video because I showed Bob the first one I took and he said, "I look... like....weirdo!" and he wanted me to take another one. So I did. That's the first time he has shown an interest in my video/picture taking of him. Still, I know, he has a long way to go...

Anyway, do think he's speaking better and hope it's not my imagination (and/or wishful thinking). What do you think?

Thursday, November 17, 2011

Back to Real Life

Yesterday, my mom and dad, aunt and uncle left for home, and Bob and I are back to our routine. Yesterday, too, he had a doctor's appointment, then a trip to have his monthly blood tests and I am exhausted, sad and thankful--that latter for the nice visit and respite that it brought, but sad to see them go.

Mom & Dad with Bob (and Boomer, too!)
While here, my father changed the oil in The Green Machine and also "recharged" and cleaned the air filter (I didn't know that such a thing needed to be done! duh). He also fixed our front screen door which was sticking--thus making it a complete bitch to get the wheelchair out to the front porch. And he got a new faucet for our old bathtub and paid the plumber to install it. Then, he and my Uncle Don helped me get my "new" used computer set up as my old one was gasping its last breath. My mom redid my door wreath (which was a mess) and hemmed a pair of pants for me and even restrung a windchime that had fallen apart. (Thank you, mom, dad and Don, you don't know how much these things mean to me.)

Bob and I managed to get to the beach (where they were staying) three times, though Bob was decidedly uncomfortable by the end of the day with severe pain in his back and neck. I wish I knew how to make him more comfortable in his wheelchair (I had thought the new customized chair would do the trick, but alas...) His neck muscles are still very weak and atrophied from the CIDP, even though that disease is "gone", the damage still lingers. My poor father was once called into "urinal duty" when my mom and I went for a walk on the beach.  Otherwise, I think it was good for Bob to get out of the house to do something different and fun, even though he was exhausted at the end of the day. It was also good for Bob to socialize, even though this was quite difficult for him, he did give it a good college try. Although, for some reason, he kept calling my father, "Grandpa".

I got to get out of the house for a few days, which was terrific. We went shopping and to the flea market and, last but not least, we made a trip over to Clearwater to see the famous tail-less dolphin, "Winter" who swims with a prosthetic tail. The place was packed because a movie about this dolphin has just been released (A Dolphin's Tale). I wish Bob could have seen that dolphin, she was quite inspirational.

So now it's back to "real life" here, and back to our daily routine.

Tuesday, November 15, 2011

Five Dollar Dilemma

The other day, while walking Boomer, I noticed a spot on my glasses and stopped to clean them off. As I looked down, I saw a five dollar bill on the ground. So I scooped it up and Boomer and I went on our way.

When we got home, I told Bob that Boomer and I had had a profitable morning walk and I showed him the five dollar bill. He reached out for it, so I gave it to him.

He held that five dollar bill at an arm's length and stared at it as if it were an artifact from an alien planet, so I said, "Do you know what that is?"

He said, "No."

I said, "It's money."

"Money," he repeated, still staring at the alien bill.

"Do you know how much money that is?" I asked, because he looked so confused.

"No." He shook his head. This from the guy who used to meticulously balance the checkbook and always keep track of his commissions in case the company made a mistake on his paycheck. This is the guy who used to worry about every single cent. Now, he doesn't recognize a five dollar bill....

So, I pointed to the number 5 in the corners and said, "It's five dollars."

"Oh!" he said, then asked, "so... more than a thousand?"

"No. More than one dollar. It's like five one dollar bills."

He still studied the bill, then he asked, quite seriously, "More than twenty thousand dollars?"

Well, I wish.

Saturday, November 12, 2011

Money Does Buy Happiness

Yesterday, I found out how the "other half" lives, by that I mean the caregivers with money. And oh, it is lovely.

My parents and aunt and uncle are still in town and it has been a struggle finding someone to watch over Bob so that I can get out for some much needed respite. I had thought I had it all arranged, Chris had volunteered to help and also another neighbor, Barbara, then there was Bob's former IV/IG nurse who volunteered to keep her calendar clear for us and she had a back-up friend who would sit with Bob for $30.00 or so.

The best laid plans, as they say.... Chris ended up in the hospital with a blood clot in her leg and had to have surgery, the other neighbor fell ill. Bob's former nurse got here a couple of times but then got tied up in other commitments and her back-up friend decided she wasn't "comfortable" with the situation.  Yikes.

(And before anyone mentions that I should check into county/state programs, I already have. The only program Bob qualifies for has a waiting list of over 6,000 names, the social worker said not to expect anything for probably two or more years, and then maybe not at all because of budget cuts...)

So yesterday, my mom and dad hired a caregiver from an agency. This cost $16.00/hour! And this for just a "caregiver" not a nurse, so they can't administer meds or feedings through the peg tube. They do handle diaper changes and can transfer from wheelchair to bed and even offered to do house work! Though I declined the housework part, feeling Bob needed the attention more than the house needed cleaning---not that the house doesn't need cleaning, but.... Then, the caregiver arrived and she was just wonderful!

The whole afternoon I received only one phone call from her and that was because Bob wanted to play Scrabble and he kept asking for her to get the "box" and she didn't know what or where this "box" was but I figured out what Bob meant was "book" not "box", meaning he wanted the Scrabble Dictionary. Turned out she didn't know how to play Scrabble and I was told, when I got home, that Bob taught her how to play. (Now, that would have been interesting to watch!) Later Bob told me that she was "horrible" at Scrabble, but he had fun and that's what mattered. I was able to get out of the house to go shopping with my relatives and out to eat afterwards and though I was a bit worried at first about leaving Bob with a stranger, it all worked out so well. It was unbelievable.

And they say money doesn't buy happiness. All I can say is I sure wish we had the money to hire an agency occasionally. It certainly made me happy yesterday! Though I can't say as much for Ripley, who spent the whole day cowering inside the covered litter box...

Today, we are off to the beach again and Sunday, the hired caregiver is coming back for another round of Scrabble. And right now, it is time to get Bob's bedbath done and get him going for the day. So I'm off.

Monday, November 7, 2011

Relearning To Walk

Yes, we need a bigger hallway!
As I mentioned in my last post, Bob is up to a new record of 31 times walking the rail. This translates to about 186 feet of stepping, plus 31 times pulling himself up and sitting back down. He has more than doubled his record of 15 times set in September. I am so proud of him!

He still needs to pull himself up on the rail and still leans heavily against it (as you can see) but he is taking bigger and quicker steps and is gaining confidence.

My mom took this picture of us, that's me holding onto his gait belt, strictly for safety reasons. With my other hand, I pull the wheelchair behind him so he can sit down quickly if he needs to, or I can pull him backward by the belt into the wheelchair if he starts to slide...

The day of this photo, Bob had a difficult start on the rail, then we all looked down and realized why.... I had put his shoes on the wrong feet! Lord almighty--so much for impressing my folks with my therapy skills...

Thursday, November 3, 2011

Seeing Him Through Other Eyes

Yesterday, my mom and dad and my aunt and uncle arrived for their yearly visit. It was so good to see them. The last time they were here, Bob was still in ICU waiting to be transferred to Kindred, the pulmonary hospital. After they flew in, got their rental car and checked into the motel and got settled in, they came to visit us here at the Pink House.

I'm afraid we are not set up for visitors these days--the living room being converted into Bob's room with his hospital bed pretty much taking up most of the floor space. In the old days, we would have sat on our front porch, but Bob and I had done therapy earlier in the day and he was bushed from walking 31 times on the rail (yes! 31 times!) and I didn't have the heart to drag him out of bed into the wheelchair. So, we all sat in the living room, crammed around the hospital bed. After the initial greetings, the how-was-the-flight? type stuff, the atmosphere grew somewhat awkward.

Bob, I must say, was quite valiant, trying his best to keep the conversation going, but unfortunately all that was coming out his mouth were sentence fragments and odd words strung together which didn't make a lot of sense and left everyone confused. Much of what others said to him seemed to go right over his head, though he answered "yes" and "no" questions he often said "no" when he meant "yes" and vice versa and I had to continually jump in as if I was an interpreter of a foreign language. And I tell you, each time he tried so very hard to speak and came up with gibberish, it just about broke my heart.

And I can't help feeling that my god, he's worse than I thought.

I guess we've been somewhat isolated here and I have grown used to his often meaningless chatter. Which is why I am in rapture every time he speaks a clear sentence. But just seeing him, yesterday, trying so hard..... well, it still brings me to tears.

Today, I plan to take him out to the beach resort where my folks are staying. I do hope everything goes well.

Tuesday, November 1, 2011

All Saints' Day

Yesterday, I asked Bob if he knew what day it was and he answered, "I don't know." So, I gestured around the room which I had decorated for him in jack-o-lanterns and a plastic ghost, but he still didn't get it, so I said, "It's Halloween, silly."

Bob said, "Duh. Happy Halloween!"

And I said, "So you know what that means? That means tomorrow is..." I wanted him to fill-in-the-blank, because tomorrow would be my birthday. Long ago, Bob had told me that he would never forget my birthday because it was so easy to remember, being the day after Halloween.

But Bob said, "I don't know."

So, I coaxed him further, "Today is Halloween and that means that tomorrow is the day after Halloween, which is what important day?"

Bob thought about it for a minute, then, triumphantly said, "All Saints' Day!"

OK, that is true, but...

One year ago today, Bob, while in ICU, extubated himself which is a fancy way of saying he yanked out his own breathing tube and, to everyone's amazement, began breathing on his own.  So today is a good anniversary.

Anyway, happy All Saints' Day to everyone, happy anniversary to Bob and happy birthday to me, even if I'm the only one here at The Pink House who remembers that last one!