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Sunday, December 28, 2014

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.

Tuesday, December 23, 2014

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....

Saturday, December 20, 2014

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!

Sunday, December 14, 2014

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.

Friday, December 5, 2014

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....