Reeve Foundation Paralysis Community

I hate taking my husband to the hospital because this is how we both feel…like we are both wearing the “I’m with Stupid” shirts because that’s how they treat us.  I’ve seen every health care mistake in the book and then some, so I always have that defensive attitude right off the bat.  Last Friday I had to accompany my husband to the hospital for a procedure.  It totally pisses me off when they talk to me and act like he isn’t even in the room.  It happens all the time.  He had been to this same hospital the week before for a chest x-ray and the staff mistook his private nurse for his mother.  How, I don’t know since she is only a few years older than him.  Anyway they said “Mom, you can bring Joey back now.”  No my husband’s name isn’t Joey.  His middle name is Joseph so I guess they got confused…imagine that.

 

Anyway on Friday, they call him back.  The nurse tells my husband that she is going to draw some blood.  She then hands me this paper and sort of whispers..”I need you to fill this out about him.”; almost as if his paralysis is a secret to him.  It is one of those stupid medical history forms that nobody reads and just wastes your time.  Typically I complete it to the best of “our” ability, but this time not so.  I know that this procedure in no way depends on this bogus history form, so I begin filling it out using less than my best ability. 

 

Under medications I draw a big line through the entire block and write “See attached.”  We always have a computer list of his medications.  Under past surgeries I write “too numerous to list.”  Hey there were only 3 lines on the form.  I need way more than that.    Then there is this section to circle all systems that you have difficulty with..like eyes, ears, nose, bladder, skin, on and on.  It doesn’t ask the difficulty, just wants you to circle the system.  I end up circling about every one.  The funny one is “difficulty walking”.  Do I circle that one?  He doesn’t have difficulty; he can’t do it at all.  Just because I’m irritated, I say in a loud voice to my husband..”Honey, do you have difficulty walking.”  He says “yes last time I tried I couldn’t do it.”  Now the nurse gives me this really hateful look, but I don’t care.  There is also this section about pain.  Where and how often?  On that one I write “everywhere” and “all the time.”  I look in my husband’s backpack for his medication list and find it plus a grocery list from last week.  I was half temped to attach the shopping list but decide against it and actually attach the medication list. 

 

Anyway, I turn in the form filled out “to the best of our ability”.  Guess what, nobody even looks at it.  Nobody asks one single question about all the information and circles I made.  Humm…maybe they should just pass out word searches instead.  I know, in some cases these forms are important, but it seems that nobody ever really pays any attention to the forms.  Maybe if they did, the next gal down the line wouldn’t have tried to hand my husband a clip board.  If she had read the form she would have known that he has difficulty with walking and using his arms.  I just can’t help it.  I get so irritated with the health care system.  It makes my husband crazy too.  The best thing you can do is laugh a little and pay attention to every move they make.

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

I decided when I was in the hospital, if one more x-ray tech told me to "hop up on the table" I was going to scream!

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T 7-8 since 2005

Haha

I got a script from my Dr for PT. On it she wrote I should have physical therapy for difficulty with my gait. What? As far as I know I don't even have a gait anymore.

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I just came back from yesterday.

Your post made me think of a t shirt my daughter wore home last weekend.  (She is a PT major)

You may call it checking someone out, we call it gait analysis.

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T 7-8 since 2005

Oh man, I could write a book .....

I feel your pain.  Filling out forms over and over and over and OVER again, none of which anyone ever seems to look at, most of which are so redundant that I am ready to scream by the end, and most totally unapplicable because of his injury (any trouble with walking or physical activity?  how much do you exercise every day?)

I sign for my husband because while he can sign if you put a pen in his mouth, the idea of sticking a dirty pen in his mouth, especially at doctor's offices and hospitals is just gross.  Or if he feels absolutely horrible, the last thing he wants to do is put a pen in his mouth, stretch his neck and try to sign a stupid piece of paper.  And anyway, I have power of attorney so I can legally sign for him.  But I get grief about it probably 50% of the time that I do.  That is so annoying. 

And lol re: gait analysis .... I'm gonna have to remember that one! :) :) 

 

brightblueskies:

And lol re: gait analysis .... I'm gonna have to remember that one! :) :) 

 

Yea, she is a pt major, and the pt club ordered them.

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T 7-8 since 2005

I think we should all compile a book and then hand it out at hospital teaching sessions. Sort of a patient care for dummies manual, with an emphasis on disability. I can't even begin to tell you the times I have heard "you really can't walk at all?" When that is answered in the affirmative the next question is "what's wrong with your hands?" No concept that it could be all from the same accident. Or the times someone breezes in the room after an MRI or a mamogram and says "you can get dressed now" with no concept of the fact that if they want to use the room in the next four hours or so they had better give me some help or I will still be there with my bra wrapped around my head in the ear muff position instead of where it should be.

How about the "are you sure?"

Um, no, maybe I'll try again, well what do you know .......

Yes I'm sure you ......
 

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T 7-8 since 2005

webmouse:

Or the times someone breezes in the room after an MRI or a mamogram and says "you can get dressed now" with no concept of the fact that if they want to use the room in the next four hours or so they had better give me some help or I will still be there with my bra wrapped around my head in the ear muff position instead of where it should be.

 

That is too funny.  During the incident that started this whole thread, the nasty nurse sent in some guy.  He had one of those little hospital gowns in his hand.  He announces, "the nurse asked me to get him in a gown."  I'm thinking...yeah right.  My husband is 6'1", 200 lbs, paralyzed from the neck down, and sitting in his chair.  All I say is "well, good luck with that."  Turns out, he really didn't need to be in a gown after all. 

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Bra in the ear muff position, omg, I nearly spit my tea out on the screen ....!  And 'are you sure' .... I love your response sjean. :) 

I hate it when they tell me to get him on the table and totally undressed.  I always ask if its really necessary because its an ordeal to get him transferred, undressed and in a gown when 95% of the time, the exam does not require him to be naked on a table.  It's just what they always say.  Yet, 95% of the time if I question it, the nurse says nastily "YES, he MUST get undressed and on the table".  I should do the 'well, good luck then, I'll be back after I get a coffee and YOU get him on the table in a gown'.  :)  I always insist on finding out why exactly he needs to be undressed on and a table; if the nurse is nasty (95% of the time!) I tell him or her to go FIND the doctor and give me the reason he needs to be naked and supine on another surface.  Usually that spurs the doc to come in to see this uppity patient's wife and they say "ohhhhhhhh, ok - no, he doesn't have to get undressed".  :) 

When I was still in rehab, I was dealing with frequent xrays.  This was the same place with the guy who though I could "hop up".  But I had to be lying flat on the table, and we all know how horribly uncomfortable lying flat on the hard surface of the xray table is, especially only a few weeks post.  After the 2nd or 3rd set of xrays, I had a different tech.  Who transferred me from the gurney to the table, mattress and all!   Well DUH,  why hadn;t anyone else thought of that?  It's not like they use metal mattresses, and the pads on the gurney aren;t really all that thick.  But it was just soooooo much better.  The next time, back to techn #1, I was trying to explain, and getting an arguement, about how they can;t do that, etc,etc, when thankfully, person #2 came in.  That was the end of that discussion!  (I also think #2 was a superior as well.)

I have also run into a lot of great people.  I had an xray done of my knee at a little walk in place a year or 2 ago.  SHe has no experience w/ someone who couldn't "hop up" but was very willing to listen, and do it my way.  SHe also went out of her way to postion my leg so that it would stay in position on it's own.  And the xray department at the hospital I have don o/p rehab is fantastic.  But I have learned, if I go for xrays, to dress for it, no snaps, zippers, underwire, and you won;t have to strip!  Because while NORMALLY I can get myself dressed without getting my bra over my ears (Still laughing at that picture!)  put me on a narrow exam table, and my typical roll back and forth will end up right on the floor.

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T 7-8 since 2005

Yes, on the positive side, when my husband broke his arm recently, there was one tech who took the xrays with him fully clothed (minus his concealed glock of course*) and in his chair.  She just gently leaned him forward, put the thing behind his back, I held him in place while wearing a lead apron, she got a portable machine and presto, done.  He had to have them done about once a month for 6 months so we ALWAYS asked for her.

 

 

 

* JUST KIDDING!!!!

I get really frustrated too and could probably write a book about all the impossible requests that have been made of me and inappropriate questions and comments that have been made when I have needed medical tests or anything like that.

 

But I guess to keep myself sane when it happens (which can be hard because some people really do test my patience and good will), I do try to think how much I knew about spinal cord injuries before I was hurt. And yeah I know that one would like to think if people work in a hospital or clinic or other medical type setting they would have a bit more of a clue than people out on the street. But that hasn't been my experience. I was even a little shocked when one of my nurses told me how little students learn about spinal cord injuries in the 4 year RN degree program she graduated from, unless they tailored their elective courses to get more exposure on the neuroscience units. 

 

One thing I will admit though, is unfortunately I have started to give up on trying to educate most people on the "whys" anymore. I really used to try. Like if I went for an xray and somebody tried to hand me a pen and a form to sign, I would usually explain briefly why I couldn't write. I don't much anymore. Some people really do get it. But more often than not I would just be met with a blank stare. It gets disheartening after awhile, the reason I stopped explaining. I have learned that if I just try to ignore the silly questions and such, my frustration levels when I have appointments and need tests is much more manageable. Easier said than done sometimes..

 

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"Don't be silly, Toto. Scarecrows don't talk. "

Ok, another one.  (One I should have spoken up about in hindsight).

Early days, in rehab, a weekend night.  They had pulled a nurse in from another floor.  2am she is cathing me, and is having trouble getting the cath in.  I suggest she ask someone else to do it.  NO, No, I am good at this, I am the one they always call over if they are having trouble.  blah, blha blah. Anyhow, I am spasming now, my body does not like repeated attempt.  and the nurse scolds "Well, I am not going to be able to do this if you don't stay still!".

I am thinking in hindsight, if she is going to sub on the rehab floor, she needs some basic info! 

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T 7-8 since 2005

Hi Trish,

Thanks for this post. Your story made me laugh and feel indignant--and reminded me of an experience that I had recently. 

  

I am fairly new to the SCI community.  My new girlfriend has a SCI and frequently travels in her chair.  As I was seeing her off at the airport a few weeks ago, a TSA agent, a "mature" aged woman, approached us to beckon us to the front of a long line of travelers waiting to go through security.  However, I quickly became irked that she addressed only me, not my girlfriend.  So, when she asked if I would like to get a "gatepass" to accompany her, I said a little tersely, "She'll be fine" I felt uncomfortable and embarrassed that I was even answering for her at all.  We had already said good-bye, and fuming, I headed to the car.  About half-way there, I thought, "I'm an idiot--I could be waiting with her for her flight" so, I went back and got the gate pass, and the same matronly TSA agent walked me to the front of the line and told the agent checking IDs: "She needs to be at the head of the line, her daughter is already in there"

At first, I was just a little shocked, and then the humor of it settled in.  I was less annoyed at the TSA agent who was not ignoring the person in the chair, but was talking to the mother.  OK, I could live with that.  Still, vanity tells me she never really looked at her...and next time, I'm kissing her good-bye.

Shan