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Monday, May 11, 2015

Caregiver Frustration, Anger & Guilt

Two stories here. The first, as told to me by Bob's CNA (who comes in twice a week).  I call her "E."

E. was pulling into a drug store parking lot when she witnessed a man grab an elderly lady and "drag" her toward a car.

On hearing the beginning of this story, I said, "Oh my gosh! A kidnapping!"

E. said, "No, it was his mother."

So the story goes that E. slams on her brakes and jumps out of the car because, as she says, the man is  yelling at his mother in a way "one should never speak to a woman" and she confronts the man, who explains to E. that he had only gone into the store to "pick up one thing" and had told his mother (who has Alzheimer's) to wait in the car and when he was standing at the check-out he saw his mom ambling off across the parking lot, so he ran out and grabbed her and was taking her back to the car.

E. then tells the man that this is "no way" to "treat a woman".

The man tells her to "mind her own business" because she (E.) "has no clue" what it's like "to be a 24/7 caregiver".

To which E. responds that she knows full well as she has been "a caregiver" for over 20 years (meaning working as a CNA) and there is no excuse for his behavior.

All this erupts into a yelling match between the man and E. And when the man "shoves" his mom into the car and drives away, E. photographs his license plate number to report him to the police.

And I can only imagine what that man was feeling/thinking when he saw E. snapping photos from his rearview mirror...

Story #2 is more personal.  Let's call it "The MRI Day From Hell"....

Two weeks ago, Bob was scheduled at the hospital for an MRI. I was told to get him there 20 minutes early as they had to arrange for orderlies to lift Bob from his wheelchair into the MRI. So, I plan accordingly.

That morning, I got Bob bathed, dressed, shaved and ready to get up in his wheelchair with a good 45 minutes to get to the hospital. Then Bob tells me "pee" meaning he's going to pee and we have to wait on the transfer to the wheelchair. So, I leave the room and double check my purse (do I have everything I need? cell phone? etc.) and when I return to his room I find that GAA! somehow Bob's catheter tube had gotten disconnected from the cath bag and there he was, blissfully unaware, peeing all over himself!  And his pants and bed were soaked...

So, good thing I left plenty of time, because now I had to remove his pee-soaked clothes and wash him and also change the soaking sheets out from under him (no small feat) and put on new sheets and new clothes...

And then it was up into the wheelchair and there are good transfers and bad ones and, of course, that day we had an awkward bad transfer that took more time than usual. Then out to the van, where Bob immediately ran one wheel off the ramp and GAAA!! nearly tipped over. Then finally into the van and on our way and I'm looking at my watch thinking well, we won't be 20 minutes early but we will at least be on time for the MRI, when Bob announces he wants "a smoke". And I tell him there is no time for a smoke, but he insists and gets whiny about it, so I pull over (as there is 'no smoking' on the hospital campus and that includes the parking garage) and let him have a smoke and that takes a few minutes but I'm thinking I'm only 2 minutes from the hospital and we have 15 minutes to get to the MRI room and we should be OK.

Of course, once in the parking garage I can't find a wheelchair van accessible parking spot, they are all taken and I have to stop at the valet who directs me to a space that is (GA!) parallel parking which I am absolutely no good at, but I-- with much trepidation and after several white knuckled tries -- I manage it and by this time, we are late and I am more than frazzled.

But I get the van parked and the ramp down and Bob's chair unhooked and Bob backs up and somehow backs up into the space between the driver's seat and the rear seat of the van and he can't go forward or backward and the wheelchair wheels are just spinning as he pushes the joystick. So I try to help him, but manage only to make it worse and end up having to pull the plug (so to speak) and throw the chair on manual over-ride and try to pull that heavy wheelchair out of its predicament and I finally succeed only to have Bob take over the controls and back himself up INTO THE SAME POSITION that I just freed him from and GAAAA!!! I SNAP! And I YELL something like "WHAT DID YOU DO? TAKE A STUPID PILL THIS MORNING???!!" And I also, in my frustration, yell some other stuff, stuff I don't even remember now.

And of course at that moment, the valet appears asking if I need help and I tell him "no" and I do manage to get Bob back out of the corner and down the ramp and we are now 10 minutes late instead of 20 minutes early and I'm trying to rush but Bob is tooling sooooo slow and we take a wrong turn and get lost (this does not help) and finally make it to the MRI room a good 20 minutes late instead of 20 minutes early.

I get us checked in.  And I sit down.  And it's then I look at Bob and see tears streaming down his face....

And shoot.  Do I feel like the winner of The Bad Caregiver Of The Year Award? You betcha.

I mean, I feel like a total, absolute shit.

And then, everyone in the MRI suite is asking what's wrong.

Oh my.... what does one say?  And I say something like we had some trouble getting the wheelchair out of the van and got lost and are late and we are both just frazzled... And thankfully, no more questions are asked. And Bob goes off for the MRI and everything returns to normal...

I guess I'm sharing both of these stories because E's story really bothered me. I don't think she should have confronted the man and his mother in the parking lot.  I mean, who is she to judge? Not knowing these people, what they go through, and only seeing this one small snapshot in time?  And I certainly don't think she should have reported him to the police!   jeepers

And I don't think many folks (even CNA's -- which by-the-by is ABSOLUTELY NOT the same thing as caring for a loved one) understand what it's like to be a 24/7 caregiver to someone you love (unless they've actually done it) and how often you feel both physically and emotionally helpless and the frustrations (and anger and guilt) that come with the turf.

Being an unpaid/volunteer/doing-it-out-of-love/never-having-a-break caregiver is NOT an easy job, emotions run high, both good and bad ---  and even the best of us have bad days, it really can't be helped -- it's called "being human" -- and we all (me, the guy in the parking lot, all of us caregivers) need just a little understanding.

Tuesday, May 5, 2015

Something Every Caregiver Should Do ...

So, on Saturday, I was walking out of the grocery store, carrying a bag of groceries, when I felt something SNAP in the back of my left calf. And an unbelievable pain shot through my leg which nearly brought me to my knees.  (This is not the "something every caregiver should do", in fact, I highly recommend you to not do this, if you can help it.)

Anyway, after I pulled my wits together, I limped painfully to The Bobmobile and went home. The next day, the pain in my leg was so intense, I could barely walk. And I knew, for my own sake, I needed to "baby" my leg. That's when I eyed Bob's power wheelchair and decided to put it to good use.

Now, I have driven Bob's wheelchair before -- to park it, to move it from his bed to the charging station, etc. And I thought I had the hang of it. But I've never relied on it for my mobility.

All day, on Sunday, I power-wheeled through the house doing my normal chores. I tell you, it was an eye-opening experiment. There I was, crashing into doorjambs, scraping up the woodwork, bouncing off the walls, dragging furniture and assorted sundry items in my wake. It's not as easy as it looks.

I learned that many things in the house which I thought were OK were not. It was like obstacles were jumping into my path. Like the footstool in the bedroom, which I ran into not once, not twice, but three times. And, truth-be-told, I really didn't think it was in the way when I placed it there. And the bed, which would be ALOT easier to get around if it were moved three inches to the left. And the door to the laundry room, which needs to be kept closed lest it catch on the back of the power chair and the free-standing medicine cabinet which got trapped between my rear wheels (not once, but twice) and needed to moved a few inches right.

Then there were things. I tell you, in my wake I dragged my purse (caught the strap on the rear wheel) and my shoes and a couple of books. (I need to be more careful where I leave these things.)

In addition to obstacles and things, I learned that just navigating the chair is not as easy as it looks.  And our ramp in back is certainly not as easy to navigate as it looks. The turns are quite tricky. And if you stop the wheelchair on the ramp, the wheelchair keeps rolling! GAAAA!

I learned one must be super careful and really watch what you are doing even while you are "parked". I found this out the hard way when I reached for something and my left breast brushed the joystick and sent me slamming into the refrigerator.  I call this "boob driving" for lack of a better term.  And along with "boob driving" there was also "armpit driving" and "elbow driving" and my! I learned that joystick is touchy.

I also learned that everything -- and I mean everything -- takes a lot more time and is a lot more difficult in a wheelchair....

But, I guess, the biggest lesson I learned was to be more patient with Bob when he gets "stuck" in corners, slams into things or tools along sooooo slowly that it can be really irksome.....

And I think, every caregiver should do this. Jump on that wheelchair and spend an afternoon of chores in it. Heck, I think everybody should do this, caregiver or not!  It will really open your eyes. It sure did mine.

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


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 "" 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 (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


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!

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?