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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"!

Saturday, March 14, 2015

Home again, home again, jiggity jig!

We are, finally, home, from the hospital ordeal. Bob resting comfortably. Me -- finally getting some needed rest, too!

I tell you, I had to shake my head at the many well intentioned folks who told me to "take this opportunity" (while Bob was hospitalized) "to get some rest". ha! Sometimes, I tell you, there is a HUGE disconnect between folks who are caregivers and those who are not. Especially with folks who (through no fault of their own) have never dealt with a person with a language disorder such as aphasia. To leave Bob in the care of others who will not/cannot understand him, and to leave Bob to "fend for himself" especially when he is sick, is nothing short of flirting with disaster. I mean, this is the guy who will say "yes" when he means "no", and cannot tell someone his name or birthdate or even clearly voice his wants or needs or concerns...


So my job this past week was not so much "caregiver" as "body guard". To make sure no mistakes were made, and Bob's needs were met and he got better and then, safely home.

I tell you, I think playing hospital body guard is a lot more draining then normal caregiving... Always on my toes, stuck sitting in a rock hard chair in a cramped hospital room, every muscle in my body aching after a few days, not being able to leave the room for more than a few minutes because a doctor might appear at that exact moment I depart. And of course, Bob won't be able to tell me what the doctor said or did...

And, by the by, where do these hospitals get these darn uncomfortable chairs? From the Prison Supply Store?

I swear...

Anyway, this past week, I caught one mistake after another, including the doctor who wrote an order to remove Bob's Fentanyl pain patches, but FORGOT to write an order for new patches to replace them -- and I'm thinking, what??!! Are they trying to throw Bob into withdrawals on top everything else??? And another incident where I walked into the room (after running out for a Coke) to find a scrub clad person with a stretcher in tow asking Bob if his name was "Allen" and Bob saying "yes".  Good Lord.  Good thing I got back in time to catch that, before Bob was carted off for God-knows-what procedure he didn't need...

Then there was the doctor who wanted Bob sent, not home, but to a Rehab facility. Because, she said, I wouldn't be able to care for him at home "in his condition".  So, of course, I told her that he's been in "his condition" for four years now, and he's been home the whole time and it ain't been a problem yet --- geez

And then there's the PT who came to evaluate and "clear" Bob to go home "independently" and actually brought a standard walker in the room.  A walker???!!! GA!!! She told me, outright, that she couldn't send him home until he was on his feet, taking steps! And I am, of course, arguing that he couldn't walk before he was hospitalized, so what makes her think he should be walking now??? And thank God I was there, before she attempted to yank him out of bed and stand him up with that thing.


Then there was the nurse who was so confused because the doctor had written an order for "PO" meds (by mouth) and the chart said NPO (nothing by mouth) and he was unsure what to do....

And the OT who wanted to help teach Bob how to "eat his lunch" ---

and I could go on and on. But believe me, Bob needs a body guard when he's hospitalized....

I'm glad to be home. Bob's safe and sound and very tired. And I'm very tired too.

We now have a nebulizer for breathing treatments and they are supposed to send some kind of suctioning machine today (yum) and we'll have twice weekly nursing visits and more doctors appointments and ....

I'm going get some well deserved rest!

Wednesday, March 11, 2015

On The Mend

Late yesterday, they moved Bob from ICU to a regular room -- a sign that he is on the mend. I'm told he will probably have to stay in the hospital the rest of the week for IV antibiotics. I hope to spring him by the weekend, fingers crossed!

Thanks everyone for the well wishes! I wish I could take the time to rest, but spending days at the hospital is not relaxing. Yesterday, when I came into his room in the morning, he stretched his good arm out to me and cried out "Miss You!!!" and "Help!!"

I arrive in the a.m. and stay past 6:00. The house is lonely without Bob. Ripley has taken over his hospital bed, waiting for Bob's return.

Last night, I called Bob's room to say "good night" and he didn't want to hang up the phone. Kept saying "miss you" and "go home". I tell you, my heart goes out to him...

Meanwhile, I crashed the new van into a phone pole. GA!!! Add that to my list of stuff to take care of once this hospitalization is through!

Monday, March 9, 2015


Just a quick note:

Bob taken to the hospital by ambulance this morning when I could not wake him up. Had a temperature of 102 and BP of 63/40...

Doctors are calling it "sepsis". Seems he has both a UTI and pneumonia. They are waiting for more test results.

He did rally round after IV fluids and antibiotics. But they are saying he may be
Not a happy camper...
in for a long hospital stay...

He is wanting to go home.

I am exhausted...

Friday, March 6, 2015

Bath Time Stories

So! Last Saturday, we used the bath lift for the first time!

And I was able to smoothly get Bob into the tub ...

And then had to call The Fire Department to get him out.

I kid you not.

What happened was that Bob sort of slid in that tub, sort just sunk down (and down and down) until the water was clean up to his nose and I, of course, pulled the plug so he wouldn't drown.

I must admit, I was not prepared for this to happen. We had done a "dry run" with the medical tech who installed the lift, but the key word here was "dry" -- no water in the tub.  My main concern with the water was a) would his condom cath stay on? b) would his pain patches float away? and c) would his peg tube be ok?? I had not even considered the fact that the wet tub surface might be too slippery for him...

Anyway, in the process sliding down, Bob also slid sideways and ended up in a sort of fetal position:  butt caught against the side of the tub, weak (paralyzed) side underneath him. And he couldn't get himself upright.  And I couldn't get him upright. And the lift is designed to slip on while in a seated position, not in a fetal position.

Believe me, I tried to get him upright. Tried to get him back into the lift. I tried and tried and had tears in my eyes and got so very frustrated that I found myself stupidly and inexplicitly calling out "Mommy!"  This from a 54 year woman whose mom is 1400 miles away -- jeepers.

So I finally broke down and called 911 and they sent two very nice firefighters to our house. Poor Bob, bare butt in the air, stuck in that tub, was quite embarrassed.  It took all three of us: one firefighter at Bob's feet, one at his shoulders, and me manning the lift device to get him out of that tub.

By the by, the firefighters thought the lift was "pretty neat". They had never seen one like it.

Anyway, we got him out and no one was hurt. Though immediately afterwards, Bob had a bowel movement (without the usual assistance of a laxative) and I figured either that whirlpool was soooo relaxing or --- the whole episode literally scared the shit out of him.

And jeepers, the thing is not working if one has to have The Fire Department on speed dial every time Bob takes a bath!

So this past week, I had some bath modification made. The first was to add another grab bar on the tub in the location where Bob had been grabbing, trying to right himself. Then to add some no-slip treads to the bottom of the tub. And third, I had the tech guy who sold us the lift stop by and release the spring tension on the arm supports as that was getting in my way when I was trying to get the lift under Bob's paralyzed arm.

And even after all of that, it was with some trepidation that we decided to give it another try this very morning. I mean, it was scary...

But I decided to do it today because the contractor has guys working outside (translate that to: help if I need it) and so we did...

Once in the tub, Bob decided he didn't want to get completely out of the lift this time, I think he was too scared to "go it alone" -- so I only unstrapped his legs.

And we did it! In and out, smooth as silk. No fire department required!

Here's a pic of one happy, relaxed, clean Bob:

Bob's "first" successful bath post-stroke!

Oh, and condom cath stayed put, patches did not float away and peg tube seems A-OK.