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Monday, April 27, 2015

4+ Years Post-Stroke/Aphasia and His Brain is Waking Up

I have really been amazed at how much Bob has grown, cognitively, these past few months. It seems (and other people have remarked) that suddenly Bob is "more with it".  I mean, he appears to understand more of what's going on around him, AND he is a lot more interested in what's going on around him, AND he is suddenly making A LOT more sense when he speaks.  It's like his brain is finally "waking up".

I credit this improvement to all the hubbub/excitement over the move, all the commotion going on with carpenters/plumbers/electricians/etc. in the house, and also, my attempts to keep him in the loop, so to speak, on the renovations and the decision-making involved in that process.  For example, I took him with me to pick out kitchen cabinets and ceiling fans (big mistake, the latter, as Bob pointed to/wanted the MOST EXPENSIVE one they had at that store and would not settle for less!) Of course, a lot of people thought I was nuts to include Bob in those decisions (especially the contractor) but I really wanted Bob to be part of the process.  It is, after all, HIS new home, too.

Among other things, Bob is suddenly interested in his radio again. Pre-stroke, Bob had purchased a rather expensive (at least I thought) C-Crane radio and loved to play with that thing.  Just recently, he surprised me when he requested to listen to TALK radio. This was a habit of his, pre-stroke, when he loved to talk back to talk show hosts during the day and fall asleep listening to the rather eerie late night program, Coast-to-Coast. Post-stroke, he has only wanted to listen to "rock and roll". Talk radio, it seemed, was all just "noise" to him.  Not anymore.  He is requesting talk radio turned on at bedtime every night.

One of Bob's doctors, noting Bob's cognitive improvement, said, "Amazing what a change of scenery will do to reactivate the brain!"

And the change of scenery has been good for him. He now wants to get up daily to "tool around". Before, he would spend weeks in bed, only getting out when forced to go to doctors or therapy. Now he likes to drive his power chair around the new house and look at things we've had for years, almost as if he is first discovering them now.  He will, for example, point to an antique sign or picture or knickknack and pronounce it "Neat!!" or "Cool!!" as if seeing it for the first time.

He is also more interested in the scenery when we go places. He actually has asked "Where are we going?" (a good sentence, that) when before he pretty much let me cart him around without objection or interest in what was going on.

But along with this leap in cognitive improvement, I hate to say, there is a downside as he has also become downright weirdly anal about some things.  Like his bed. 

Now his hospital bed is on wheels and, as always, I move it aside to accommodate the wheelchair when we do transfers. But now, when Bob is back in his bed and I roll the bed back into place, he has suddenly developed exceptionally high standards concerning the bed placement.

I mean, imagine this:  Bob, leaning over the side rail of his bed, actually squinting one eye down the shiny chrome railing, like a sharpshooter looking down the scope of a rifle, lining it up perfectly with some mysterious landmark.  I still haven't figured out what he's looking at (dresser? door knob? knot of wood on the floor?) but that bed railing absolutely must be lined up perfectly with it (whatever it is) --- and if it isn't, I am directed to roll his bed this way and that-a-way until it is lined up.

And then there's the foot of his bed, which must be angled in some mysterious conjunction with the wooden parrots in birdcage next to the TV -- 

And then there's the bed level.  Which has to be perfectly matched to the height of the side table. And I mean perfectly --- if it is a smidge off, I am set to adjusting the bed up and down, headboard and/or footboard up or down until we reach the perfect match.

I tell you, some days, I spend 20 minutes or more adjusting his bed to these picky specifications. Which can be downright maddening to a busy caregiver (who, at a point, just wants to send that bed spinning across the room -- I mean, all right all ready! jeez-us!)

Then there's that C-Crane radio, which he has me turning up and then down, then adjusting tremble, bass, etc. (it's a complicated thing with lots of knobs and buttons) and re-adjusting it, because with his aphasia, he still says "turn it up" when he means "down" or "base" when he means "tremble" until some nights, I swear, I'm getting no sleep (and cranky as all get-out) as I am on "radio patrol".  

Finally, one day, I got him out of bed and told him to drive over to the radio and adjust all those stupid knobs/buttons, once and for all.  I wasn't sure if he could do it.  But he did!  And I promised not to touch the dials.
Bob adjusting his radio

So, for better or worse, he is coming out of his shell. His brain is suddenly (finally) "waking up" after more than four years of fog.  And I do hope it continues.... (I think)



Wednesday, April 22, 2015

Stuff

Which is what's been keeping me busy -- stuff! Lots of stuff.

My list of stuff:

Taking Zenith to the vet, three times. (Our house call vet is on medical leave.) Zenith's been vomiting daily. $900 in vet bills later, they still don't know what's wrong with her -- stress, maybe? From the move?  We are still waiting for some of the test results. Meanwhile, the vet said she's dehydrated and prescribed a "drinking fountain" for her.  So add to my list of stuff:

Researching/finding/buying/setting up a cat drinking fountain. This one is from "Thirstycatsfountains.com" and I ordered it because it's not only functional but attractive....
Cat drinking fountain and a meditating Ripley.



But, of course, both cats ignore it -- except Ripley, who likes to sit by it -- perhaps he thinks it's a meditation fountain....


And -- finding/buying/installing a window box on the house. There were old (original) brackets on the house for a window box, but the box was long gone. Contractor originally told me that he would build one, but then told me it "wasn't included".  So, took me awhile to find one that fit...
My window box!  Fits perfect!
And I'm pleased as punch that I found one that fits perfectly. It's a "Charleston" from Flowerwindowboxes.com. (At least something worked out right, for a change!)  As you can see, though, our house badly needs a paint job!  So add to my list of "stuff" --

Finding/hiring a painter, picking out paint colors, trying out sample paint colors and buying 32 gallons of paint!

Samples of our PINK house colors!

And I'm giving myself a pat on the back for finding a guy who will paint the house for $2500 -- remember the $11,000 quote I got from the contractor???  I do have to buy the paint, but got in on a Sherwin Williams 40% off paint sale last weekend and the cost was $1500...

And the list of stuff continues, including --

Getting Bob enrolled back into therapy.  The therapist loves Bob's new wheelchair and utilizes the tilting position for exercises, especially for "gravity pull" on his neck muscles.
Back to therapy!

Then, also, dealing with doctors (the usual suspects, plus.)   Bob's pain management doc is sending us all over regarding the foot pain Bob's had since the foot surgery (yes, he is still in pain) and so I've taken him in for a tri-phasic bone scan, foot x-rays, specialists' appointment and next, an MRI scheduled next week---

And, also on my list of stuff -- add, taking the van to the body shop for repairs after I introduced it to the telephone pole in the alley, and while the van was in the shop, spending a whole darn day waiting for the wheelchair transport to get Bob to his doctor's appointment.  Of course, that day, the transport company's computers were not working and it pouring rain. He had a 1:00 appointment and we didn't get home until 5.  Made me really, really appreciate the Bobmobile!

And add to that, I lost my freaking checkbook -- I kid you not. Had to report to the bank, have the account "frozen" and daily check that bank balance. Still hasn't turned up and I have turned this house upside looking for it.

Add to that all the internet problems with Verizon --- and the hours on the phone with that --

Add to that, unpacking boxes and setting this house in order -- and doing a little decorating:



And still a lot of unpacking/decorating/etc. to do...

And add all the usual caregiving stuff --

And then add, last but not least, haggling with the darn contractor over things that were done wrong, things not working right including the water heater AND a/c for the garage apartment, things not finished, roof leaking, and I'm still waiting for a bathroom door for Bob's bathroom and a battery for the generator -- then he tries to charge me $1500 for something he originally told me would be a "freebie"--I won that fight, but I tell you -- I am tearing my hair out...

I've been a busy gal.  Hoping things will settle down soon...


Tuesday, April 21, 2015

gggrrrrrrr--ROWL!

I am actually typing this while on hold with Verizon and I have finally gotten back on the internet after Verizon made a "mistake" and freaking cancelled my internet service last week!

I tell you, I have done pretty much nothing but been on the phone with Verizon trying to straighten this mess out, was on the phone on Fri/Sat/Sun -- each time, was told it would be straightened out, and was on the phone four hours yesterday, two hours this morning (until they accidentally cut me off) and now back on the phone since 1:00 p.m. (it is now 2:25 p.m.) and just finally got internet service back (just now) and am waiting on hold because my e-mail account has been "suspended"!!! Ga!  ---- and the tech is trying to figure out how to "un-suspend" it.

So what's been happening to all my e-mails this past week if my account was "suspended"?  Who knows. Hope there was nothing important there --- aaargh!

Anyway, just thought I'd post a note here to let you all know I am still alive and if anyone has been trying to reach me this past week, I've been out of the internet loop.

Will try to post a "real blog" soon! God willing.  Or should I say, Verizon willing....




Sunday, April 12, 2015

Wheelchair Race!

Oh my, I've been so busy and so much you-know-what going on, with the contractor winding down on the renovations and all sorts of glitches with that, plus the usual junk, plus other junk, including a sick kitty, and still trying to unpack and set this house right  --  I haven't had time to blog.

But here's a quickie.  Chris finally moved into the apartment in back this week -- (lots of glitches there too --) Then Chris challenged Bob to a wheelchair race!  Here's some pics:

And they're off! Down our alley --- 

Chris takes the lead ---

Bob had to stop and change his speed mode as Chris left him in the dust --- she actually turned around, so he could catch up....  

Whoo hooo! Bob takes the lead!

Zooooom!
And I have to say, Chris was more freaking out about Bob's driving abilities than I usually am -- shouting to Bob to "watch the curb!"  or "watch the dip!" or  "WATCH THAT TREE!!!" ...  Yikes -- She made me a nervous wreck....


But we reach our destination, an estate sale six blocks away.  OK - I am, following behind on foot, trying to keep up, sweaty, nervous and exhausted! Phew!



 Bob and I bought an old oak rocking chair at that sale, for $8, (needs a seat), and I carried it home. We must've looked pretty strange, on the way back, two disabled folks on power wheelchairs and one able bodied woman, running behind them, carrying a fixer-upper rocking chair! Oh my, what do the neighbors think?  

Friday, March 27, 2015

Begone, Old Bed!

One of the first things I did, when we got the settlement, was order two things that Bob desperately wanted for a long time (and Medicare would not pay for) but now we could buy:  a power wheelchair and a new bed. That was back in August.

Finally, we got the wheelchair in January.

And Wednesday, the new bed arrived.  Can you believe it has taken this long?? Heck, meantime, after ordering those two things and waiting of their delivery, I bought a wheelchair van, and bought and sold a house... jeepers!

You might remember Bob's old bed, which was the rather creepy, "standard Medicare bed". It was semi-electric, meaning that only the head and foot could be lowered or raised electrically. Otherwise, you had to get on your hands and knees to use a hand crank, sort of like the crank of a Model T Ford, to raise and lower the bed. I tell you, that is a pain in the you-know-what for any caregiver...

And, on a side note, it's been really sad to see the inferior quality of the types of medical equipment that Medicare "allows" not just with beds but pretty much everything ... and jeepers, you'd think the government (Medicare) would figure out that if they spent a little more money on actual decent equipment for home use, that it would enable more people to stay in the home -- as caregivers would have adequate equipment and not get so goll-darn worn out  -- not to mention (for example) a good bed will prevent pressure sores, and a decent wheelchair will give independence and etc. etc. AND don't they realize how much we (at home unpaid caregivers) actually SAVE them money as opposed to nursing home costs???? grrr
Bob in the old bed, shoulders "off the top" -- pillows held up by the slide board...

Anyway, Bob was also truly uncomfortable. I remember when he first got home from the hospital and kept telling me that his bed was "dippings" meaning sinking in the middle. I remember him begging me to "FIX IT!" and how he would actually point his finger at me so accusingly and yell "FIX IT!" and how very helpless and frustrated and geezus sometimes in tears I was when I couldn't "fix it" for him.... (the service tech I called and who came to look at it and told me to put plywood over the springs! Which I did, but that still didn't "fix it".) And I had to tell Bob to "deal with it" because we couldn't afford a better hospital bed.... And he did, all these years. And the first thing he asked for, when we got the settlement was "a bed"...

Also, with the old bed, I had to jam the slide board between the mattress and springs to hold up his pillows because the plastic headboard wasn't tall enough. And he was always wanting to be "boosted" over the top because the bed did not accommodate his 6'3" frame.

So, it only took 4 years and 3 months, but I finally was able to "fix it"!!!! (Lord almighty, what a difference having some money makes...)

And it gives me great pleasure to document the demise of the old (much hated) bed (off to be donated to the local hospice organization) and the delivery of his new, fully electric bed with not just two different positions, but a total of seven positions (with variations of each of those). And it is "caregiver friendly" in that it can be raised or lowered to my level with the touch of a button. It also features a trendelenburg position and reverse trendelenburg, for adjusting his position in bed. And the bed is "extra tall" (80 inches long) to accommodate his frame.

Goodbye Old Bed! As Bob looks on.

Oh gosh, look at Boomer's ears! ha!

This may look (and feel) like an arcane torture device, but it is,
in fact, the creepy "standard Medicare-approved hospital bed for in-home use" (no exceptions made -- I asked)....

Hello New Bed! No "dippings" with this thing!

It has 3 joints for positioning (instead of 2) and is topped with a super thick foam mattress.

Headboard and footboard of real wood! And an attendant control on the footboard. Wow.

And one Happy Bob!



And on a side note, remember how crowded we were in the old house ??? With Bob nearly blocking the front door and no  room to manuever and nowhere to sit for company???

Bob's new "bedroom" has room for all the things he loves, plus medical equipment and cabinets for supplies and plenty of room to maneuver for transfers, etc. ...
AND seating area for guests (our old living set is out of storage and back in use again!)



Friday, March 20, 2015

"Tooling Around"

For the past four years, as most of you know, Bob has been pretty much bed bound. I mean, he really only gets up out of that hospital bed when I force him to because we have somewhere to go -- i.e. doctor's appts., therapy, medical tests or rare scheduled "fun" thing.  In the past, many well-meaning folks (other caregivers and medical providers) have advised me to contract with one of the "house call" medical groups, meaning doctors/nurses/therapists who come to the home instead of us going to them, but I've always refused, because, I tell you, if we did that, Bob would never move out of that bed at all.

And I do think getting up and going somewhere is good for his soul, even if only to a doctors office, even if it means more work for me.

So it was quite a shock, a real surprise, and a truly wonderful development that Bob, 2 weeks ago, wanted to, for the first time ever, get out of bed and, in his words,  just "tool around" on "the remote".

Um, "The Remote" is the name he uses for his new power chair....  all righty... Took me awhile to figure out what he was talking about there...

Anyhoo, two times, since the move, he has requested to get out of bed to just "tool around".  He has been excitedly exploring the house and the neighborhood (in the company of me and Boomer).  He is, also, learning to maneuver "the remote" -- though our woodwork, doors and walls pay the price!

I tell you, the move to this new house and the new power chair have been truly a Godsend for Bob. He certainly is coming out of his shell. And this interest in just "tooling around" would not have happened at our former (very small) house with the old manual wheelchair...

Here's some pics from our last adventure:


The new porch/ramp is nearly done!







Down the block! That's our house in the background.



He still only "tools" at about 0.5 mph... and I'm still terrified he'll hit a bump and topple over!

But it's so very good to see him getting "out and about"!