A Caregiver's Christmas

Thursday was Christmas Day, and that morning, while other folks were gathering around the tree opening presents, my day started out as usual, with me leaping barefoot out of bed to catch the feeding pump before the pump alarm goes off, then, on my way, slipping and sliding in a pile of wet dog poop.

So I dashed to the kitchen to grab some paper towels, only to find that one of cats had left me a Christmas present on the counter -- a long, snaking tube of hairball puke.  Ho ho ho!

After cleaning up all that, and after disconnecting the feeding pump, flushing Bob's tube, giving Bob his morning meds, giving the dog his morning meds, feeding the cats and going for a long walk with the dog, I decided to treat myself to a frothy cup of cappuccino (the instant kind) and a couple of my mother's famous "ice box cookies" (great for dunking) that she sent in her annual Christmas care package and peruse the Sunday newspaper and, in that way, I prepared to spend a quiet, calm Christmas day watching sappy holiday specials on TV with Bob...

But alas, it was not meant to be, at least not yet. For not a half hour later, I hear a cry for "HELP!" from Bob's corner of the room.

And when I go to investigate, I find myself face-to-face with the mother-of-all-monsters and OMG, I nearly fainted straight away.  But let me back up a bit here --

Bob had been in the middle of his "morning powdering ritual". I must say, he developed this somewhat strange compulsion for baby powder since the stroke and has concocted a rather elaborate morning ritual which, on a good day, takes at least 15 minutes, but on a bad day, can take up to an hour or more.  This started after, in the early post-stroke days, Bob had trouble trying to one-handed sprinkle baby powder out of the bottle and his OT suggested I purchase an old fashion powder puff for him. So now he can powder himself one-handed using the puff and the powder jar and I can do other things whilst he completes his morning "toilet". And this is what Bob was doing when he called Help!

But I must back up again, to his Christmas morning meds, when he mentioned he was constipated and requested a laxative, which I dutifully gave to him.

Oh-kay. I think you'll begin to get the picture here, as when I arrived at Bob's bedside to find him butt naked (though still wearing socks), half powdered and sitting in the biggest pile of human feces I have ever laid eyes on. And I mean, this thing was HUGE! The size of an average well-fed, chocolate colored house cat.  And, I kid you not, it was ALIVE! I mean, the thing was moving, like some giant octopus, sending long tentacles of slurry sludge inching toward the edge of the bed pad.

And it was enough to make anyone faint, but of course, I couldn't faint, though I had the urge --- I pride myself in being able to efficiently handle catastrophes such as this, so I dashed back into the kitchen and grabbed my latex gloves, plastic garbage bag, roll of paper towels and set to work.

No small task, that. Because it was very wet and very sloppy and a bit like sludge and there was A LOT and my paper towels just disintegrated on contact. So I grabbed the next nearest thing, my Sunday paper, and pulled out the comics and tried to mop it up with that...

And I don't know what it was, perhaps the smell of newspaper combined with the smell of you-know-what combined with the creepy texture of the whole thing, but when I lifted the leaking newspaper up to plop it into the garbage bag, I lost it.

I tell you, cappuccino and ice box cookies taste much better going down, than coming up...

This took me by surprise (not that cappuccino and ice box cookies tasted better going down, but that I actually lost my cookies, quite literally.) You know, I pride myself in having developed an iron-clad stomach for this type of thing.  I mean, I was just bragging the other day to someone how this part of caregiving does not phase me one bit anymore, and, I have been known to be interrupted in the middle of dinner, put down my fork and knife, clean up a dirty Depends or whatnot and return, unrattled, to finish my meal...

Alas, my iron-clad stomach failed me, but at least I hit the garbage bag. And then I fled the room, to catch my breath.

It's moments like this, that one would like to flee not only the room, but the country as well. But I can't. Someone's got to confront the mess. And I'm afraid that I'm the only one here. (Someone should start an emergency poop clean-up service, I'll be the first customer!)

So I steal myself for a second attack on the mess. This time using a time proven method of "Whatever you do, DO NOT look at it!"

And, instead of trying to scoop the remaining poop, I decide to cover it. With the bed pad. Which, with averted eyes, I sort of carefully roll up and fold, enchilada style, around the whole shebang.  Then, quickly, I take the whole enchilada (so to speak) and run with it to the laundry room and deposit the sloppy mess, still folded, into the washing machine.  I turn on the HOT/HOT water and pour in a half gallon a bleach and some laundry soap, switch the Pre-Soak cycle on and pray.

An hour later, I check the washer and find that I've got an interesting brown soupy mess. But it looks like everything has dissolved to the point it should go down the drain. So I turn the wash cycle on.

And after the wash cycle, I find that now I have poop pellets sprayed all over the inside of the washer. But at least it's clean poop. And doesn't smell so bad. Another two laundry cycles, plus a wipe down with paper towels and life is back to normal.  Whatever normal is....

And Bob and I watch some sappy Christmas specials on TV. Which makes me think -- you know, where are the Christmas Specials for Caregivers? Something I can relate to? Really, most all these specials have the same old plot, you know the one, with the "scrooge" like character and a battle to do something like save the local animal shelter or Christmas parade or help Santa or what have you.  I think we need a Caregiver's Christmas, with a plot about a battle with a Scrooge called Christmas Constipation,  complete with Caregiver Carols sung by animated dancing Depends and singing suppositories. Something like:

On the twelfth day of Caregiving, my true love gave to me:

Twelve new prescriptions
Eleven diapers dripping
Ten tubes a leaking
Nine loads of laundry
Eight hours of mopping
Seven buckets of urine
Six bills for paying
Five clogg-ed peg tubes!!!
Four calls to the doctor
Three french tipped catheters
Two latex gloves
And a bowel movement in the middle of the bed!

Or maybe something like this sung by a choir of angels bearing gifts of laxatives and packages of Depends:

God rest ye harried caregiver,

let nothing you dismay!

Remember, constipation

can happen any day!

So arm yourself with laxatives

and do not go astray!

Tidings of comfort and Depends

Comfort and Depends

Ooooh, tidings of comfort and Depends!

And of course, the grande finale when the plucky Caregiver conquers the Scroogey Constipation and all the animated dancing Depends and singing suppositories enter, stage right, singing:

Joy to the World!

The Turd has come!!

Oh-kay, I think I've gone completely off my rocker, so I'll end here.

Happy Holidays!

Goodbye Green Machine!

Last night, Bubba picked up The Green Machine and took her away for a 9 month spa treatment which Bubba fittingly calls her "Re-birth".

And I guess it's also fitting that a "re-birth" would take about 9 months! The reason it will take so long is that many parts (like bumpers) will have to be sent out for rechroming and other parts will have to be special ordered and/or customized and, alas, Bubba has other cars to work on, as well....

Can you believe I was driving it like this??

Work will include a new front seat. I've asked Bubba to put in a "split seat" or "bucket seat" and that way, Bob can sit comfortably in the passenger seat.

The old bench seat is far to uncomfortable for 6'3" Bob when 5'4" Diane is driving and has to pull the seat nearly up to the dash, which means Bob's knees are against the glove box.

My idea here is to give Bob some motivation to learn to get out of that wheelchair, stand and pivot into a newly restored, much loved and very cool Green Machine!

There will also be  a lot of body repair....

And fixing the cracked dash....

etc. etc.

and re-woodgraining the console

Even restoring the Swinger Logo with its original yellow flower

I was dismayed when Bubba told me that Bob's "Re-Elect Carter/Mondale" bumper sticker might not survive the restoration --- but then, I immediately found the exact same vintage bumper sticker being  auctioned at ebay and won it for ten bucks! I call that FATE!

I must say, I was glad to see the car leave as it was depressing watching it rust away at the curb....

Busier Than A Cat Covering --- well, you know the saying

I tell you, this is my first "day off" in awhile, and this is also An Official Poop Day... An Official Poop Day is, here at The Pink House, a day when I have to give Bob a laxative and then wait for, well, the shit to hit fan, or, um, I should say "to hit the Depends" quite literally...

So while I wait, I figured I'd update this blog.

It has been soooo busy here, I swear, my head is spinning.

This past couple of weeks, I have:

1. Taken the Bobmobile to the dealer because the ramp would not go up -- turned out to be a loose motor connection or something like that. At least they didn't charge me to fix it.

2. Found, interviewed and hired a CNA to work with Bob twice weekly (for two hours/day) with his speech therapy and physical therapy at home exercises. This way, I don't have to do these things! And I have someone here so I can do other things! Yes!!

3. Met with an insurance agent to sign up for health insurance for myself. (And to make my father happy.)

4. Tracked down Bob's wheelchair order and finally managed to get all the paperwork sent to the insurance company.

5. Bought Bob a bathtub!

Yes, that's a large whirlpool corner tub. Bob picked it out and afterwards, said "Thank you!!"

6. Cleaned the house from top to bottom because, even though our house was not yet listed for sale, our realtor had already found a potential buyer who wanted to look at it.

7. Showed the house. Got an offer on the house. Made a counter offer. Accepted the counter-counter offer to BUY our house!!!! Signed all that paperwork and had an official "house inspection" for buyer (which was nerve wrecking....)

8. Cleaned out half of the garage.

9. Cleaned out a portion of the attic.

10. "Gifted" the neighborhood with free stuff on the curb (extracted from garage and attic).

11. Met with Bubba and his "body man" to go over The Green Machine restoration project.

12. Woke up at 1:00 a.m. to find Bob drenched in Jevity because his feeding tube had popped its cork, so to speak. Then while cleaning up that mess -- slipped in a puddle of urine because the cath bag was leaking!  GAAA!!!!!

13. Set up and decorated the Christmas tree and sent out cards and all that assorted and sundry holiday crap....

14. Packed up a few more boxes for the move.

And -- hmmmm, what else? Therapy appointments, doctor appointments, pharmacy runs, the usual stuff.

Oh, and keeping on top of the work crews at the new house, finding all the kitchen lighting screwed up!! GA! approved Bob's bathroom layout and contacted the guy who will be putting in the lift device and all the other decision making involved in the process, plus salvaged an antique door for the kitchen and taking an antique lock to a locksmith for refurbishing....

Work is moving along at the new house. The siding has all been removed and window trim has been/is being reproduced according to the "ghost marks" left from the originals.

Before: the front gable arched window trim was hidden under siding.

The "ghost marks" from the old trim under the siding and neat little gable trim uncovered!

Arched Window with reproduced trim!

Before Side View

Side View of Arched Window (the lower part of the window was covered with siding).

Window restoration in process.

All that said, I must say the house is looking good!

Though I nearly had a heart attack when they handed me the $11,000 "bid" for a paint job! GA!!

Next week, I need to find another/cheaper painter. Hire a CPA. Take Bob to Pain Management and then therapy appointments, do some more cleaning out, packing and sorting, etc. etc. And --- I guess, try to fit in a Merry Christmas!

Therapy: Words of Wisdom

This past week at therapy, Bob enjoyed a 45 minute, deep-tissue neck massage with a massage therapist...

At his regular session, they continue to work on "small movements" that need to be developed before plunging into standing and walking. These include learning to scoot forward in the chair:

and leaning back into the wheelchair to "open the neural pathways" through his chest, abdomen and butt.

Some other words of wisdom from this new stroke rehab therapist:

1. When trying to move a muscle -- DO NOT look at it! Instead look away, and VISUALIZE the movement flowing smoothly in your imagination. This will help the brain make a better "reconnection" to that muscle.

2. To move the foot, tap the muscles (with your fingers) on top of the thigh. To move the hand, tap the muscles in the bicep and forearm.

3. The body follows the eyes! So look up! Not down. When you look down, all your muscles slump downward. When you look up, you open the energy flow between brain and body. Keep your eyes on the horizon.

4. It all starts with the butt. Once you wake up your butt, everything else will follow and wake up! So squeeze those butt cheeks and do it throughout the day, as often as you can.

Answering Machines & Aphasia...

It was bound to happen, our old cordless telephone bit the dust, bought the big one, just up and died...

And the sad thing about that is -- on the old answering machine was Bob's "greeting" recorded over 7 years ago which was, back in the day, when he could actually speak normally...

This past week, I took Bob to Best Buy to look for a new phone. And while I stood there in front of the tons of different phones trying to figure out which would be the best phone, Bob, in his wheelchair, pointed to the top row and said, "That one!"

So I bought it. Took it home. Set it up. And then had a brilliant idea. (Think lightbulb over my head!)

I would have Bob record the new greeting!

Now I realized we would probably have to rehearse and do some trial runs, but, heck, after six months of speech therapy and everyone is remarking on how much better he is speaking, I am thinking this should be a cinch!

If, that is, I keep it simple enough.

Such as: "Hello! Leave a message."

Which I had Bob rehearse a few times with some success, and then, got out the phone and hit "record", at which point Bob said into the receiver:

Hello?...... Hello?...... Hellllooooo?..... Hell-lou?

Oh-kay. I tried this a couple of times and got the same results. So then, I figured, maybe it would work better if we recorded a joint message, you know, with both of us talking but me saying most of the stuff.

So I wrote up a little script and it went like this:

Me:  Hi! You've reached Diane and ---

Bob: Bob

Me: Leave a message!

Bob: Bye!

Seemed simple enough as Bob would only have to remember two words. But after several, well actually many, futile attempts, with Bob forgetting his lines, the last "greeting" I actually recorded sounds like this:

Me: Hi! You've reached Diane and --

Bob: BOB!!!!

Me: Please leave a message!

Bob: DIANE!!!

Me: (trying not to laugh, so sort of snort-laughing through my nose)  No, say "Bye"!

Bob: ..... (no response)

Me: (now laughing very hard still waiting for a response)

Bob: ..... (no response)

Me:  (Still laughing) Hellooo?

Bob: .... (laughter)

Me: Bye bye

Bob: BYE BYE!!!!

And that's what's on the answering this morning. I played it back to Bob and he said, "FUNNY!"

Perhaps, I'll keep it....

"Unkinking The Garden Hose" and Other New Therapies

Well, Bob started his new stroke rehab program at the fitness center, and,  I must say, it is totally different than any therapy he's done before. Usually, at rehab, the PT's would just push and push Bob to get out of that chair, stand up and walk, usually at the first session. And when Bob couldn't keep up to their expectations, well, he was booted out the door...

This trainer is exactly opposite and is taking things slowly. Starting with Bob's neck and what the PT calls "unkinking the garden hose":

The trainer also says that Bob is not ready to stand up and walk yet. He needs to work on strengthening all the individual muscles needed for the job first:

And another different thing about this stroke rehab, they actually invite you to take photos and videos! Unlike the other places we went where signs are posted all over that recording/photographing is STRICTLY prohibited. (I always had to sneak those photos in....)

The idea is that by videoing the session and taking it home, you can review what you learned.

And this PT has not given up on Bob's paralyzed right arm/hand.

All I can say is, I wish we had this type of therapy four years ago...

PS: If you experience any problem with sound quality/picture quality on these videos, click on the YouTube icon to go directly to YouTube for a better viewing experience.

Caregiving X 2

So, I knew this was coming, but as always it seems to happen too fast.  Boomer, my beloved, best friend, best buddy, Great Dane/German Shepard/lovable mutt and 12 year companion, recently turned 13 years old. And man, he is showing it.

Boomer in his favorite spot on our front porch.

I had the vet come to our house last month for a check-up, as Boomer is really slowing down and his appetite has been picky/poor. She diagnosed severe arthritis and also neurological problems caused by the arthritis, including loss of sensitivity to his rectum, which is why he sometimes, you know, looses control of his bowels while he is asleep and, of course, the big dog hip dysplasia...

Surgery could correct the hip problem, but the vet thought that would be too risky at his age. And now, it's down to "keep him comfortable" and happy and quality of life issues and take it day by day...

Soooo -- Boomer has been prescribed doggy hydrocodone (WHICH IS A CONTROLLED SUBSTANCE! GA! So once again I am on the "try-to-find-this-pain-med" trip, but now for the dog!) and Gabapentin, plus glucosamine supplements (he was on these before) and recommended daily walks (which I have been doing for 12 years, so no problem there). So I am popping pills down this poor dog's throat several times a day... not fun for either of us.

Also, she suggested acupuncture and hydrotherapy.  Oh-kay -- I'm starting with the pharmaceuticals and we'll see how it goes. I guess I might have to put a pool in the back yard at our new house, not only for aqua therapy for Bob but for Boomer!

Also, I bought him a doggie orthopedic bed, which he didn't like at first, but has gotten used to. He needed something as he has so much trouble getting on the couch.

Boomer in his new bed, by the fireside

I hate to say, I know Boomer's time is coming, and it will be heartbreaking, but it's not here yet. He will tell me when it's time. And I'm glad to know that I have a vet who will come to our house to do the heartbreaking deed, if/when needed.

Meanwhile, I will take care of this wonderful dog who has always been there to protect and comfort me.

And, on another note, I am still trying to get this wheelchair order mess straightened out! Basically the medical supply company blames the doc and the doctor's office blames the supply company, but someone somewhere did drop the ball and now we have to go back to the prescribing doctor's office next Tuesday, because they say the wheelchair eval is "too old" and we need a new appointment ---  grrrrrrr-OWL!

AAARGH!

Remember this:

That pic was taken in July, when Bob test-drove the power chair and the chair was "ordered" in August...

And since then, I've been told, repeatedly, that all the paperwork was turned in to the insurance company and they are "processing" it....

Seems like it was taking a long time...

So, this week, I called United Health Care to check on the status of the wheelchair...

And was told, they never received any paperwork regarding a wheelchair.




That's all I'm saying, before I hit the roof...

Unmasking a Beauty

So! Renovations started today on our new house! We are now in the "demolition" phase, meaning the things that need to be taken out, are being taken out.

Before...

First to go, the front porch enclosure (remodeled in the 1960's):

Before --

And I know, this is really an aesthetic thing, but man, Bob and I have long loved old houses (and even Bob said (about the porch), and I quote "open it up!") We knew that there was a beautiful old porch hidden under all this---

In process...

But I wasn't prepared for it to look like a miniature Southern Plantation! And already, I am more in love with this house!



Unfortunately, this a.m. I get a call from the contractor. The vinyl siding was hiding the fact that we got one really badly damaged support beam (GA!) that has to be replaced.....

As Bob says, "oh well"...

But, truly, isn't it lovely?

Neuromuscular Re-Education-- or "It's all about your butt!"

So, two weeks ago, Bob had his four week "re-certification" at Outpatient Rehab. He passed speech with flying colors, not so much PT...

Once again, he's caught in that "plateau" trap, the "no progress" or "slow progress" and "no functional improvement" crap and he's about to be booted out of the insurance-paid-for-therapy door....

This time, however, because Bob has a trust fund and we can afford to private pay for therapy, Bob's PT did some legwork and a found a highly recommended personal trainer at a local fitness studio who specializes in stroke and brain injury rehab.

Friday, we went to the fitness studio for a "free consultation" and "evaluation" with the personal trainer.

And I tell you, it was very different from the usual insurance-paid-for-therapy evaluation. In fact, the "therapy" is very different from anything we've run into at all the different rehab centers we have frequented in these past four years. This place practices the "BEST method" (stands for "Better Educated Strength Training") and the stroke rehab program concentrates on "neuromuscular re-education" and this therapist/personal trainer actually talked about things like "neuroplasticity" and "brain-to-muscle connectivity" and things I've really only read about -- up to now.

So, this sounds like pretty exciting stuff....

Our one hour evaluation consisted mostly of the trainer explaining the theory of "neuromuscular re-education" which is basically re-training the brain to take back control over the muscles, then taking Bob's history, and checking out Bob's range of motion. Then we got, what I will call for lack of a better term, "The Butt Lecture." Which went, something like this:

Your Butt is the largest muscle in your body.

As the largest muscle, your Butt is connected to and affects all other muscles in your body.

If your Butt is weak, your whole body will be weak!

If your Butt is weak, you will be unable to properly stand or walk!

A weak Butt will make you walk hunched over and unstable!

A weak Butt will cause your spine to twist!

And sitting on your Butt all day, weakens your Butt!!

Therefore, step 1 in the program will be to Strengthen 

Your Butt!!!

He then asked Bob to squeeze his butt cheeks together. I was really unsure if Bob could even do this -- in fact, I really don't remember any therapist ever asking him to do this -- but lo and behold, Bob did manage to do a butt squeeze, albeit a sort of wimpy squeeze.

This PT says Bob needs to work on his butt squeezes, and then he needs to work on being able to squeeze one butt cheek at a time, and alternate each side -- I'm thinking, huh? Can a person really do that? And you know, I tried it (right there in that therapy room), and tried it again (at home), and, um, am still trying this ---and heck, I don't think it's even possible! -- but then, I am no butt expert. Perhaps, my butt is weak, too!

The "evaluation" was coming to an end, and I asked what type of equipment they used. And the PT told me they would not be using equipment with Bob, at least not right away. That his first goals for Bob would be 1) butt strengthening and 2) re-training Bob's brain to control Bob's neck muscles so Bob could hold his head upright again.

Then, he told me that all the other therapists had been attacking Bob's neck problem all wrong. That those therapists had been, hands-on, stretching Bob's neck muscles for him and this was in no way training Bob's brain to hold his head upright and that could only be done by teaching Bob some methods to stretch his own neck...

So, after Bob's neck is straighter and his butt stronger, the therapist would then work on standing and taking steps.

And, he said, he would also like to see Bob move his right hand and arm. And I'm thinking, what?! Is that even possible? Four years post-stroke?

I mean, Bob's right arm/hand have been pretty much "dead" now for four years and every other therapist has given up on it, so I tell the guy this, and he tells me about one of their other clients, who also suffered a massive stroke, and three years ago he came to them in a wheelchair, unable to stand or walk, and all his previous therapists had told him that he would never walk again and today, he is walking with a cane...

So I called Bob's trustee and she's sending a check, and I signed Bob up for eight weeks of "neuromuscular re-education" therapy (2 times/weekly) and we'll see what happens....

Should be interesting.

Makes me sad, though, to know these types of therapies are out there, and available, but only to those who can afford it. Bob's eight weeks will cost $960, something we never could have paid for, before....

So, I'll share what we learn here!

Right now, everyone, Lesson #1:  Squeeze Those Butt Cheeks!!!! (and if anyone figures out how to squeeze one cheek at a time, let me know.... )

Happy Birthday to Me

Today is my birthday. And this morning, when Boomer and I returned from our morning walk, imagine my surprise, and how very touched I was, when Bob greeted me with a rousing rendition of the traditional "Happy Birthday" song! This is the first year, post-stroke, that he actually remembered my birthday!

His version went like this:

Happy Birthday to you!

Happy Birthday to you!

Happy Birth--day, dear Lisa!

Happy Birth--day to yooooo!

All righty....

And then he said, "See? See?" meaning "See, I remembered!"

And, I could tell, he was so proud of himself for remembering! So I didn't say a word about the, um, you know, "Lisa" part.

It is the thought that counts...

Selling The Machine...

So, I put The Green Machine up for sale. I tell you, this was not an easy decision. But I figured it was best for the car, you know, instead of sitting on the street and rusting to death....

First, I called Bubba, who told me to not take less than $2,500.00 for her. Then I called several numbers of folks who had expressed interest in the car in the past, but, although some of them said they'd call me back, they didn't.  Then I took a billion pictures of it and posted it on Craigslist. Or I tried to post it on Craigslist -- but for some reason, even though the website said it was posted, The Green Machine was not showing up on the site... hmmm....

So I did it again. And again. And finally, the third time, it really did get posted.

Then, I posted For Sale signs on the car. An hour later, I walked outside, and the signs were gone. Both signs had fallen off. So I got out the masking tape and tried again. Two hours later, both signs had fallen off again..... hmmm....

Finally, I gave up and slapped the sign under the windshield wipers.

The first time I started The Green Machine up (after I put her up for sale), she wouldn't start. She sometimes (if she's been sitting a week or more) takes two or three attempts before she starts, but it took six attempts to get her going. I really didn't think she was going to go... Then, when I drove her around the block a few times, the radio would not work. This is weird. Because the radio always works. If fact, it's the only reliable part of the car. And now the radio was completely dead.

Right away, I got an offer of $2500 from a guy who lives down the block. He told me he needed "a couple weeks" to "get the money together." I took that as code for him having to make a few more drug deals to get the money together. A couple of weeks passed. I never saw him again. I mean, really, the guy just disappeared from the neighborhood. I do wonder if he finally got arrested...

And another neighbor wanted to know if I'd take $500 now and $500 a month for four more months. That neighbor, too, has since seemly disappeared off the face of the earth. I do hope he's OK...

The second time I started The Green Machine up (after I put her up for sale), she didn't start until the fourth try and then, BLAM!!!!! THE RADIO CAME ON FULL VOLUME AND NEARLY BUSTED MY EAR DRUMS OPEN!  I drove her around the block a few times, and she was running really, really rough.

I then got an offer of $1000 from another neighbor. This guy told me he wanted to paint The Green Machine orange and put on mag wheels and use her for drag racing....  You can imagine how that made me feel, I mean Orange? ORANGE? Drag racing??? Mag wheels??  The Orange Machine?!!  GA!

I told him I would think about it. But truth be told, I couldn't imagine such an ill-gotten fate for The Green Machine....

The next offer I got was from someone on Craigslist, it was for $1500 and only tentative,  he wanted to come see the car first.

The third time I started The Green Machine up (after I put her up for sale), she took four tries again to get going, then, the gas gauge died.  I mean, it just sunk to empty. Heck, it sunk to below empty. And I knew it was wrong because the last time I drove her it had a half a tank..... And still she was running very very rough.

The guy from Craigslist did not show up to see the car. Another neighbor offered $1000.00. He wanted to paint it purple and give it to his 18 year old son... yikes! Then he told me he couldn't offer me more, because he would have to stick $3000.00 into it....

And I'm thinking $3000? Because I thought it would cost a heck of a lot more than that. So I called Bubba and asked him how much it would cost to restore The Machine.

And, really, it's not as bad as I thought.

So, I took the signs off the car and took the posting off Craigslist and Bubba is going to hook me up with a guy he knows who does bodywork and won't screw me over.

The next time I started The Green Machine up, she started right up, the radio worked perfectly, the gas gauge sprang to 1/2 a tank and she purred like a kitten....

And I guess she's here to stay.....

A Breakthrough At Speech Therapy!

Well, he finally did it! On Wednesday, Bob was able to come up with a full, complete, grammatically correct sentence to describe a photo!!!!

This task (describing a photo with a sentence) has been a challenge for Bob and the ST has been running him through photo after photo for over a month now. Bob struggles so, trying to find the words, it's really heartbreaking to watch. He usually can come up with a noun, sometimes even the correct noun (ha!) but he seems at a loss on how to construct a complete sentence. You know, with verbs and conjunctions and modifiers and whatnot.

So on Wednesday, when the ST showed Bob a photograph of a girl riding a horse, Bob actually said, without prompting of any sort: 

"The little girl is riding a horse."

well, actually, it was more like this:

"The little girl..... is.... riding.... a horse."

I tell you, both the ST and I jumped to our feet and applauded him!  I mean this is BIG. No, actually it's a HUGE step for Bob in the right direction. I mean, really, he actually said "The little girl is riding a horse."  All I can say, is WOW!!!

Meanwhile, things have been hectic here for me, so I am sorry if this blog has been quiet. Between trying to get started on packing our things, I've met with contractors several times, also with a medical equipment consultant regarding a lift device for the bathroom (I am trying to decide whether a ceiling lift or portable lift would be better), and I am also trying to sell The Green Machine (took pics and posted it on craigslist, which was hard, to say the least) then, in the midst of all this the darn Bobmobile had to go into the shop as its fog lights would not (no matter what I tried) turn off  and were constantly draining the battery. When I took the van up to the auto shop, they could not fit me in (even though I had made an appointment) so I had to spend near all of last week connecting and disconnecting the battery every time I parked the van or started the van.  grrrrr  Finally, that's fixed, it was a short in a circuit.... 

Then Friday, our dear friend Chris was hit by a car while crossing the road in her power wheelchair!  Thank goodness, she's OK, just banged up a bit, but her power chair was totaled and I'm now trying to find her a new/used/free-or-cheap replacement....

And add the usual stuff, and you know, never a dull moment here at The Pink House.

Dear Anonymous:

Yesterday, I checked the Spam folder for my blog. I must admit, I don't do this often and it's been awhile since the last time. I used to check it more frequently, before I put up that "prove your not robot" picture thing on the comment section. Since then, I get very little in the spam folder. Yesterday, I found three messages.

The first spam was offering me "Great deals on Porta-Potties!!!!" Oh-kay. Ha! I hit delete.

The second spam caught me off guard as it didn't make a lick of sense. Posted by "Anonymous", as a comment on my blog about Bob's new I-Pad, on June 16, it read:

"Nice having your own blog where you can delete

truthful but unfavorable comments that you

don't want to face up to. You can't have your generous

blog friends seeing that, although I'm sure some of them

thought the same thing.

Isn't it time you stop using good-hearted people?"

I read this message and thought, Huh? I read it a second time, then a third. Since it wasn't signed, I had no clue who this person is/was or what they were even talking about. So I hit delete.

Then I read the third spam, also posted on June 16th by "Anonymous" about an hour earlier from that second spam, as a comment on Bob's new I-Pad. It read thus:

"That was a really bold and selfish thing for you to ask of Dan. 

 You should have waited until you got your money, or you should have 

purchased it on a credit card. If you don't have one, I am

pretty sure one of the companies would give you one now.

I certainly hope you pay it forward."

All righty.  So now I know what that second nasty spam message was all about.... At this point, I had a couple of choices. I could hit delete and forget about it. I could revert the spam into an approved comment on that blog post, but since the post was over three months old, I doubt anyone would read it. Or I could do this, blog about it, which will give me an opportunity to respond (and others an opportunity to comment.) So here's my response:

Dear Anonymous: (May I call you Anon?)

First of all, Anon, I find it irksome when folks don't sign their comments. Why are you hiding?  A long time ago, a writing instructor told my writing class that one should never publish a single word that one is not proud to own, i.e. no hiding behind pen names, no hiding behind "anonymous", if you are not proud of what you have written, proud enough to put your name on it, don't publish it. Good advice, if you ask me.

Secondly, I did not delete your comment. It ended up as spam. This is done by a spam detector which I have no control over and I don't know why your comments ended up spam, but perhaps because the comments weren't signed? Or maybe it's your brower or server or address....? I don't know. I'm not that high tech. All I know is I did not delete your "truthful but unfavorable" comment. I did not even read it until yesterday. 

Then, Anon, regarding the whole I-Pad situation, I do hope my blog readers don't think I was "bold" or "selfish" to accept Dan's very kind offer. I had already accepted his offer, which he had sent to me out of the blue, and after mediation where we "resolved our dispute" with the hospital, I wrote to Dan and told him I would totally understand if he wanted to withdraw the offer. I also told him that, if they still wanted to send the refurbished I-Pad, I knew Bob would really appreciate it now and I would "pay it forward" by giving it to another aphasia patient in need. I left the decision completely up to Dan and friends and they decided to go ahead and send it.

And also, Anon, as far as credit cards go, do you realize that we had nearly $30,000 worth of unpaid medical bills and defaulted credit cards in collection at that time? I do not think any credit card company would have given us a card, on just my word, until that mess was cleared up. And the one card I had was nearly maxed and needed for monthly medical supplies.

I wonder too, Anon, if you know how hurtful your comments were to me and do sincerely hope that no one thinks, like you, that I am a "bold" and "selfish" person who "uses good hearted people". But I suppose it's an easy thing to write hurtful comments when one doesn't have the courage to sign their name...

Sincerely,
Diane @ The Pink House on the Corner

FlashApps Animal Category

All that said, Dear Readers, I want to take a moment to thank Dan & Company again -- your gift to Bob was not just a gift of an I-Pad, but truly a gift of speech!

And really, who'd have thought? I can't believe how beneficial this I-Pad has been for Bob. I mean, who would believe something like an I-Pad could help speech therapy so much?

Bob's ST found a free speech app called FlashApps which is geared for Bob's specific aphasia problem -- that of using the wrong word in the right category. For example, Bob will call a "cat" a "dog" or  his "arm" his "neck". He's in the right category (animals or body parts) but has the wrong word. FlashApps provides 12 categories (everything from body parts to animals to colors etc) with a series of photos of four different things in that category. The voice will say the word and Bob has to pick the right photo. If he chooses wrong, the photo he chooses gets X'd out and he's told to try again.

Bob is getting really good at FlashApps, going from 20% correct to 100% correct answers on every category except "body parts" -- he is still very very bad with body parts. But, he is also speaking more spontaneous correct words! The ST is very excited with his progress and has graduated him to harder assignments involving comprehension and memorization and forming complete sentences. She still uses the I-Pad for showing him a variety of photos/scenes and asking/cueing him to construct sentences to describe what he sees.

So, as Anon insists, if I am truly "bold and selfish" for wanting the best for Bob, well, I'm glad, because having this I-Pad in conjunction with this therapist at that time and place has been nothing short of a miracle. If I had waited until the first settlement payment (in September) Speech Therapy might have been over, ended for lack of progress, as has happened in the past.

And believe me, I will never forget the generosity and support that Bob and I have received from so many wonderful people over these very trying, long four years. And I will do my best, to the best of our ability, to pay that generosity and support forward. I already have a person in mind to send the I-Pad to (as soon as I have time to get Bob a newer one!) and that person is the husband of a friend/fellow caregiver I met online, and he suffers from aphasia (the result of a traumatic brain injury) and they are financially struggling...

Busy Busy

Last week was a pretty busy week here at The Pink House on the Corner. First, Bob was approved for four more weeks of therapy, and believe it or not, I think we finally found the right PT who understands the need for Bob to continue therapy if only for "maintenance"! The PT actually said that "with Bob no progress is progress" otherwise he will backslide.  Hmmm... isn't that exactly what I've been saying for four years now??? ST is still going very well.

All week, we were pushing toward a tentative closing date on the new house, which was originally scheduled for Thursday but the bank (who owned the property) kept stalling, and ultimately closing was rescheduled for Friday....

On Thursday, we met with a new contractor at the new house. My plan was to take Bob with me and, with help, pull him backward up the steps into the house. But after I got him loaded up and strapped in the Bobmobile, the darn van wouldn't start!!! (dead battery) GRRR!!! So I had to unload him, pull him back into the house, back into bed and jump in The Green Machine to meet the contractors. I tell you, I was harried....

On Friday, we closed on the new house! The closing took three hours because of a contractor's lien still on the title and we had to get that cleared up.  The closing was bittersweet. Owning and moving into a new house is both scary and exciting, and I am, at the same time, happy but sad to leave our beloved bungalow....  and very very busy, with starting to pack and organize (it's going to take forever, me alone! ga!) and all the normal caring for Bob stuff.

Twenty Years & Still Going Strong

Tuesday was our 20th wedding anniversary, and I asked Bob what he wanted to do to celebrate. Last year, we skipped our anniversary as he was still recovering from his second foot surgery. The year before I took him to the Dali Museum. It's always hard to think of something to do for a celebration, as Bob can't eat (feeding tube) or dance! So the usual celebration stuff is just not possible.  Anyway...

This year, we have The Bobmobile and can go anywhere! Anytime! Which is really liberating, to say the least.

So Bob decided he wanted to go antiquing. Of course, he didn't actually say "antiquing", he said "shopping!" and I said, "shopping for what?" and he said, "you know!" and you know, I figured it out.

Antiquing was something we used to do frequently and haven't done since the stroke.

Bob at the Antique Mall

Mostly we haven't done this as it's hard to schedule a shopping trip with the transport service, I mean, you had to give them exact times for pickup and how does one really know how long you'll spend at an antique store? Then, we used to "shop hop", you know hit a bunch of shops in an afternoon, which is impossible to do with the transport. Also, so many antique shops/malls are just not wheelchair accessible, with stairs and small spaces...

But I called around and found an antique mall that opened up in 2011 (after Bob's stroke) and they told me on the phone that they were wheelchair accessible.

So we went. And indeed they were, they even had an elevator to the second floor!


Though some of the booths were crowded and I couldn't get his wheelchair in them.

But the place was huge with, I think they said, 99 dealers.

So there was plenty for Bob and I to look at. We spent three hours there!

We found and bought a vintage mailbox for our new house. Which we need as the new house has one of those slots in the wall for mail and, the last time we had such a slot, Boomer went absolutely freaking nuts trying to tear up both the mail and the mail carrier's fingers....

Then Bob found this:

An antique pedestal sink. And he wanted it. He called it "faucets" for "my bath". I was actually surprised he remembered that we do need a sink for the planned bathroom remodel, the one that will actually be wheelchair accessible and allow Bob to take a bath. But I said no, because I was worried about hooking up such an old thing. Though, truly, it's a very cool antique sink! Then the dealer showed up and while talking with her, she dropped the price from $495 to $125 and offered to store it for us. I still was uncertain about could we actually use it. so told her I'd think about it and when we got home, Bob kept saying "faucets! faucets!" So yesterday, when I talked with a contractor and showed him the picture of Bob and the sink, and the contractor said "no problem" hooking that up, that it would be "easy", so long story short, I called the antique mall and bought it over the phone.

So Bob has his "faucets", and when I told him I bought it, he said "Yay!"

And we had a really great anniversary! Though I was utterly exhausted by the end of the day. All that wheelchair pushing. Can't wait to get that power chair...

Outpatient Rehab Continues

We are still going to Outpatient Rehab twice a week, though now, I drive Bob there in the Bobmobile, which is so much easier, I must say, then pushing him there six blocks!

Therapy days are Mondays and Wednesdays, and Bob starts with an hour of Speech Therapy. The ST has really been challenging Bob and he really loves the process. They are now working on getting Bob to form complete spontaneous sentences, instead of his usual one or two words. She works with photos and pictures and a chart reading "Who" "Action" and "What", basically trying to get Bob to come up with sentences like "The guys (who) are playing (action) football (what)". She is also working a lot on "categories", having Bob say as many words in a category as he can think of, example: "animals".  Speech Therapy is fun, filled with lots of laughter, and Bob tries really hard to impress the ST.

Singing on the NuStep!

After Speech, he has an hour of PT.  Starting with 10 minutes on the NuStep, during which Bob entertains the whole therapy room by singing. Yes, singing! And I mean, he is belting them out. Starting with 1970's classic rock songs like Smoke on the Water (Deep Purple) and I'm 18 (Alice Cooper) or old show tunes, like Singing in the Rain and once, that Seven Dwarves song that goes "Hi Ho, Hi Ho, it's off to work we go".

He has made a hit with all the therapists who egg him on and ask for song requests!

At the parallel bars

After the NuStep, it's to the parallel bars where he does some weight bearing, some squatting and is able to, unfortunately, still only take about four steps, but he really does try.

The Shuttle

This past week, they got him on a new piece of equipment, called the shuttle, where Bob has to push a weighted platform with his feet.

I was a bit worried he might not be able to do this one, but he managed to pull it off! That, without toppling on the floor!

PT ends with some neck stretching and upper body work.

Neck stretching

All in all, Bob is feeling much better and enjoying both therapies very much. I do hope we can keep it going for awhile...

A Surprise Anniversary Gift

Next Tuesday will mark our 20th wedding anniversary, hard to believe it's been that long!

September 16. 1994

When I was transferring our computer files over to the new computer, I found a document titled "Diane and Bob" and, when I opened it, I was surprised and amazed to find Bob's account, in his own words, of the day we met!  I never knew he had written this, and just reading it so much brought"old Bob" back to me, the way talked, his sense of humor, etc. And I tell you, this is the best surprise anniversary gift ever!

I know I shared the "how we met" story before, but this is Bob's version, written 20 years ago, in 1994 shortly before we were married and I thought I'd share it here, unedited, complete with typos and grammatical errors, and oh, he sort of just trails off mid-thought at the end.... (thought I'd warn you)!

Handsome DM Seeks...

The ad read: Handsome DM, 34, 6'3", blond, mild-tempered, good sense of humor. Seeks attractive, slender SWF, 25-38 who enjoys romantic times and intelligent conversation–short and to the point. I had spent my life looking for someone who was not only attractive and slender, but who had a brain and who’s only thrill in life was not lamenting for hours on the great prices in the Target ad in the Sunday paper but to talk about things that really mattered (other than the weather and how bout them Bears? Eh?).

It was the day of my cousin Brenda’s wedding. Talk about a screwed up wedding. I was an usher–a second class wedding position if there ever was one. At the reception I was wearing a gray tux complete with all the usual non-utilized accessories such as pain in the ass buttons, this waist band thing that apparently was there to stop your guts from falling out in the event we all had to commit hari-cari and a bowtie that was installed to make sure that you would not swallow more than your fair share of food.

Ah yes, the reception! That was a treat in the finer category of useless social events and traumatic experiences. I wasn’t allowed to sit up in front with the rest of the tuxes and dresses because after all, I was only an usher–in a second class wedding position. Thank God I spent $60 for the tux. I should have worn jeans or just bikini briefs and a bowtie for all it mattered.

Time for dinner, oh boy! Dried out sirloin tips, something resembling some type of potato product, and stuffing that even a taxidermist wouldn’t use. The corn was good. Try screwing up corn.

After dinner as the food relentlessly went straight for my organs, I decided to go to the bar for my own sanity.

For the next couple of hours I watched as the lovely little couples did their little lovely couple things, while I did my lovely little single person thing, which was to sit there and wait for relatives to swim slowly close to the bar and I would snatch them at the last second and make small talk, just to torture them slowly, ever so slowly. It was around 10:30 that night and I decide that it was time to go someplace I felt more comfortable–Downtown!

Sue and Jeff, my sister and brother in law, were on the first caravan leaving the reception from hell. They dropped me off at my apartment so I could get out of the patented fake leather shoes that were relentlessly killing my toes, and slip on some genuine honest to god real shoes. They waited while I changed. I thought to myself, well I paid $60 for this tux, I might just as well use it. When I came back to the car they asked me why I wanted to get downtown and leave the reception. I told them that I felt lonely at the reception and just wanted to go somewhere where I felt more  comfortable. Downtown.

They dropped me off at Spanky’s bar. Hard rock and drugs! Go’s great with a tux I thought. The bar was hopping and I started noticing that a tux wasn’t all bad, because it made all the difference as far as conversation. Did you just get married? the women said. Who’s the poor guy? the men said. At any rate I felt dressed to the max, a lean mean dressed up machine. Back to my environment, the last bastion of sanity for a DWM.

The next bar was the Helm. My place. They knew my name and I wouldn’t’ even have to ask for my rum and Coke, they just gave it to me. I walked in all dressed up and had many comments about my tux as I went down the bar. I stopped at the far end of the bar to wait for my drink. As I stood there waitng for my drink, I noticed a blond lady sitting next to a letch (one of those decrepped men who sits there waiting for next available women to fall in, black widower revisited). She turned around and nudged the woman next to her. The woman next to her turned around and gave me a really wonderful smile. She recognized me. It was a lady that was working at the local college that I had gone to called W.W.T.C. the year before.

At W.W.T.C. while I was a student there, I had noticed her one day out smoking cigarettes. At the time I thought that she was a very beautiful woman with an air of sophistication, but at that time I was going out with Cherry, a girlfriend that I had been dating for about a year (without a brain). I had broken up with Cherry last year because she was, I felt, too old for me. I was 34 and she was 46. I had visions of Depends diapers, heart monitors going Beep! Beep! Beep! (Not to be confused with the road runner going Meep, Meep, Meep! And the slight Poof that a coyote makes when it hits the bottom of the canyon after using ACME road runner killer.), and a turbo charged wheel chair with a fuel injected 5.0 liter, dual over head cam, fuel injected milti-port engine. She couldn’t remember who I was. I then told her that I had smoked cigarettes with her at W.W.T.C. Last year and that I graduated the year before in Commercial Art. I didn’t feel that she was interested at that time. There was a time while going to school there that I had finally gotten up the courage to ask her out but I never saw her again. When I first met her I had really wanted to ask her out, but I tend to be very shy and didn’t even try. She had class.

Back to the Helm.

After she had turned around, I noticed that she was a very beautiful lady, brown hair, large blue eyes, and a smile that just pierced my soul. She was gorgeous! I could feel the eyes, the eyes tell all and there was a deep attraction. As we talked I found that she was extremely intelligent and was just not another bimbo on the roadway of life. She had class. As we talked I realized that this was not the type of person that I wanted to have a one night stand with, this was someone too special, the type you spend your life with,

As we talked I found out that her name was Diane, and we made small talk about things, I noticed that we could carry on a conversation without effort. (Handsome DM seeks...) I felt at that time that  Diane deserved better than a one night stand, she was a lady and deserved to be treated as such. Through conversation I had mentioned the fact that I had placed a Date Line ad. Diane thought that I was obviously a recovering alcoholic or a snake charmer without a clue. She gave me a hard time about that and wondered what my ad said. I said that she would have to read the ads in the Sunday paper in the morning and try to figure out which one I was. I gave her my business card and told her to call me in the morning if she figured it out. It’s safer that way because, if Diane felt interested she would call, If not I would never hear from her again, but at least it would not be one-sided

Sunday morning. The phone rings. Hi, are you the handsome DM, 34, 6'3", blond, mild-tempered, good sense of humor. Seeks attractive, slender SWF, 25-38 who enjoys romantic times and intelligent conversation? Halfway through the conversation I realized that the call was from the night before. I forgot her name, what a schmuck, I’m bad with names, I hope she understands! We talk for hours and we’re never at a loss for words, like last night. We talk for hours on end and I finally ask her out. I think she’s gorgeous! I forgot her name! She forgives me. We make plans for next Tuesday to go out. I find out later that I had other plans. I hope she’s not pissed. We reschedule for Thursday night at 8:15. I’m looking forward to it.

Thursday night we meet at the Casino Bar. Diane comes in wearing a mohair coat and a wonderful hat that really shows her beauty