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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...

aaah...

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.

Jeepers...

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!












12 comments:

Barb Polan said...

Glad to hear you're both home relaxing. How do the cats like their new home?

Diane said...

Hi Barb, the cats are finally adapting to the new home. It took awhile!

Anonymous said...

So good to hear Bob is back home. Was going to comment about the doctors/staff, but if I got started this would be a book.

I hope all goes rather smoothly now with no major headaches.

Hugs & prayers, Dan

Grace Carpenter said...

Don't get me started with the total lack of awareness about aphasia in hospitals...

DebbieL said...

So glad you and Bob are home! Good heavens, can I relate to your hospital bodyguard duties! We really throw them for a loop when we are hospitalized. Not only do they have a hard time with Kaj's aphasia, but then he starts speaking to them in Swedish. Lol! And those chairs are the worst! Lousy for sitting and worse for sleeping! Hope you both can rest now and that Bob is feeling much better. Love from us!

DavKan said...

Glad you both are home as well.

Believe me, while I am one who said it would be nice if you could rest, I'm also the one who said I stayed 24/7 the entire time my hubby was in the hospital. I always have, and I always will as long as I'm able. My mom lives with me, too. She's a lung cancer survivor. In the past, she's had several extended hospital stays. I stayed 24/7 with her as well. Now that my hubby has been diagnosed with MS, and just had the stroke, I'm trying not to think about what I'll do should Mom need to be in the hospital again. That's a concern I shall have to try and plan for, maybe next week...
So I understand the "guard dog" duties we caregivers have as well.

I'd really like to know why they call the chair in the room a recliner? Yes, technically it reclines back..somewhat..but it doesn't STAY back. So every time I shift even slightly, "FWUMP!", and forward the chair goes. Of course it's usually during the 10 minutes someone hasn't been in to check or monitor something. So my hubby has maybe just drifted off to sleep, only to be awakened by me trying not to move, yet slightly shifting, and, "FWUMP!".

I guess I was "dreaming" that maybe you could rest for the very few hours you were home...which obviously was completely silly on my part. As there's so much to do, but everything is overshadowed by your concern about what may be going on with your hubby...

I also am an OT, so I "get it" on everything else you've discussed.
I always say, "With managed care, it's a wonder anyone gets any care.".

Regards,
Kan

Diane said...

LOL Kan! I had one of those recliners in Bob's ICU room. Exactly as you described! Though I'd have given my eye-teeth for one of them when Bob was transferred to a regular room and all I had was one straight back wood chair without a pad or cushion on it!

Anonymous said...

I think you should send a printed copy of this particular Blog entry to the hospital. Unbelievable.

~Lacrosse.

J.L. Murphey said...

Diane,
I would send a copy of this blog to the hospital's patient affairs and the president. That's just wrong on all fronts.

I know what you mean about being Bob's body guard. I have to do the same with my hubby. Leaving him to fend for himself for the hour it took me to shower, change clothes, grab a bite to eat and care for the pets was agonizing. His was a severe latex allergy and being deaf. Why do people think that if you yell but have your back to them that the patient can hear? That year he spent 200 days out of 365 in the hospital.

I asked for extra pillows and blankets to make the reclining chair more comfortable, but it was still hard.

Get some rest now that he's safe and sound at home.

Anonymous said...

Is this the same hospital where the initial stroke happened? It's a good thing to be a guard dog for Bob, no matter what. But I still think you should hire someone to assist at home. If they don't do the actual caregiving, they could do housekeeping like laundry, vacuuming, washing the dishes, walking the dog, and stuff like that. Those chores don't need the level of oversight that Bob does, so maybe you can get some relief that way.

Helen

Diane said...

Hi Helen, no, not the same hospital --

I do have a CNA who comes in twice a week -- she helps Bob with his therapy & speech exercises which gives me a chance to get some other stuff done

Anonymous said...

I am glad Bob is OK and back home with a great care giver. Reading your blog tonight gave me a good laugh. I needed it. Good thing you were there to be Bob's body guard. You know I love both you and Bob and only wish the best for you both. Hope this week is a better one for you.
Sally