I have a small problem taking care of quadriplegics. Nurses, I think, enjoy caring for certain types of patients and dread caring for other types. I personally find it of the utmost difficulty to take care of people that cannot move.
Which isn’t to say that I don’t try my best and do a good job. I can attend to the physical aspect perfectly, but I find that I’m completely closed off emotionally. I always try to keep some emotional distance from every patient (although sometimes get sucked in when I least expect it), but with quads I find myself not only keeping distance, but building a big huge wall.
Writing this on a blog makes it sound as though I am an uncaring coldhearted sort of nurse, but I assure you this isn’t the case. Even so, we all have our limitations.
I find it difficult to even look a quad in the eye. I feel as though they are in a place that I can’t even imagine, that I can’t even begin with empathize with. Whenever I look someone who is a quadriplegic in the eye, whatever is staring back at me is simply too much to take on, and so I don’t try. I wouldn’t call myself an overly active person, but I do take time to appreciate every single day that I can move all of my appendages. I’m not out running marathons, but I have a zillion hobbies and would feel lost if cut off from the chance to create things.
If the person has been a quad for quite some time, and they have to be in the hospital for whatever reason (pneumonia, etc), I find it especially difficult to connect with them. For almost every patient I have, I can form some kind of frame of reference of where they’re coming from. I’ve worked in nursing homes; so I can identify a little bit with what a nursing home patient’s life is like. I can certainly identify with your general patient off the street who went to work that day ignoring that nagging feeling in his chest until it became unignorable. Not that I’ve ever had chest pain, but who doesn’t think, even for a split second, that they have a brain tumor when experiencing an especially bad headache? :-) I can certainly identify with patients who have come in after an overdose. Again, not that I’ve been there, but I’ve been in the frame of mind that supports such an action.
But not being able to move yet being fully conscious… that’s too tough. It’s almost as if they’re telling me with their entire being that I will never be able to understand, so don’t bother trying. I guess when I had trouble taking care of patients that were dying, I read tons of books (some good, some not) about death and eventually felt much more comfortable with the situation. Anyone know any good books about what it’s like to be a quadriplegic?
I have been an Intensive Care nurse for 11 years. This blog is about my experiences as a nurse, and the experiences of others in the healthcare system - patients, nurses, doctors, paramedics. We all have stories!
Comments
My first thought was the books by Christopher Reeves, “Still Me” and “Nothing Is Impossible”. I have not read these (yet) but I think they would be fascinating and not totally depressing.
I had trouble relating with quads too, and sometimes with paraplegics if they were in total denial and non-compliant, which I ran into a lot in home health.
added by suzi on 08.20.03 8:18 pm | Permalink
My first thought was the books by Christopher Reeves, “Still Me” and “Nothing Is Impossible”. I have not read these (yet) but I think they would be fascinating and not totally depressing.
I had trouble relating with quads too, and sometimes with paraplegics if they were in total denial and non-compliant, which I ran into a lot in home health.
added by suzi on 08.20.03 8:18 pm | Permalink
Sorry, I didn’t mean to do that twice. :(
added by suzi on 08.20.03 8:19 pm | Permalink
Check out the blog a guy with SMA- not a quadriplegic, but interesting all the same: http://www.the19thfloor.net
added by t on 08.21.03 3:45 am | Permalink
My tough ones are the CP/DD kids. Some are so sharp and alert with bodies that betray them and others barely breathe on their own. It’s emotionally and physically draining working with them and often their families aren’t around to offer any clues to their level of comprehension.
added by Da Goddess on 09.15.03 4:02 am | Permalink
The abuse of the staff at Oakwood nursing home, Webster Massachusetts is apparently of no concern but inconvenience only to the family and the administrator. I have made numerous complaints, in writing, and received only threats of court action for “making trouble” by reporting trouble –abuse to my relative. What’s wrong with this picture?? Surley it is obvious.
added by brother doug on 12.22.04 5:30 pm | Permalink
I am a quad – and write a blog about living as a paralyzed person. Please feel free to visit my blog if you want…i have pretty good rapport with my nurses, although i can see they do get upset about the level of my paralysis. I use humor to break the tension and help folks feel more comfortable. i say bless all nurses! they’re wonderful and underappreciated.
added by ruth on 02.09.05 7:37 pm | Permalink
Hi
I’m not a book about quads, but I’m the real deal. I broke my neck in a car wreck on April 6th 1975. I just passed my 30th aniversary as a quad.
At 46 I’m still very active and alive. I find it very sad that you can’t look a quad in the eyes. Do you think we want your sympathy? We are human just like you, with have feelings just like you. I managed to except the life I faced very early on in my disability. Some never do except it, and thus live a very short misarable life. I have been very fortunate to have my family around me. I was lucky enough to also have found love we a beautiful lady. We hade several great years together. We had different ideas about what I should do career wise, so we went our different ways. She married another quad and they were very happy for the 20 years they were together, until he died.
I don’t know what to tell you that would make itmore confortable for you when dealing with a quad, other than. The best thing you can do for a quad is be their friend. Show some love and show you care. Quads can have great lives if they have friends and family who care about them and do things with them. It’s easy for quads to get around today. Equiped vans to get around in. All places of business and restarants are acommodating. Try being a friend to a quad and watch your life become more meaning and fulfilled.
And don’t be one of those tnat thinks a quads sex life is over. I know two female quads who are raising families both have had children as quads. As a male quad, I can satisfy a woman as a quad, better than most none disabled men can. With or without intercourse.
So the next time you have a quad as a patient, try warming up a bit, and let yourself get closer to that person.
Rod Taylor
added by Rod on 04.12.05 10:17 am | Permalink
Good Afternoon, I am a quad of 22 years who after injury earned bachelors and masters degrees, got married, have a child, and work full-time.
Certainly to not hurt feelings or sound patronizing, but certainly a sincere
added by J on 07.27.05 11:39 am | Permalink
Hi To all of you .
I have been looking after a quad since December 8th.And i have enjoyed ever so much.
He has a nurses room,but i yet to sleep in.I sleep with him ,we started to get intement on the secound day. I want to learn every thing that i can about Quads.
added by Debbie on 02.25.06 12:19 pm | Permalink
If you’re still reading replies to this, you might find the books “Too Late to Die Young” by Harriet McBryde Johnson and “The Me in the Mirror” by Connie Panzarino interesting. Neither have an SCI (one has some kind of neuromuscular disease that I don’t remember the name of, and one has SMA) but both describe growing up as a quad in an interesting and political way.
added by Ballastexistenz on 07.23.06 5:50 am | Permalink
don’t think quads can’t create. you have read several who write but there are also people who make art although they can’t move much of their body. a famous mouth-painter is http://www.joniandfriends.org/ and there are many others (http://www.google.com/search?q=mouth+painter). so don’t assume you couldn’t relate on the creative level. Oh yeah, another famous guy: http://www.callahanonline.com/
But many unfamous people are also creative, so maybe you will meet some.
added by n. on 07.23.06 6:49 am | Permalink
i would like to talk about the kid i take care of that is content with his life just the way it is now, he has no ambition to change or do any thing different. should i be concerned?
added by lisa on 03.16.07 6:45 am | Permalink
can some one please write back to me about this?
added by lisa on 03.16.07 6:48 am | Permalink
debbie, who is a supposed “nurse” , can barely write and seems to have the literacy level of a 8 year old or may be mentally retarded, is engaging in sexual behaviors with her patient….. wow. YOU SOUND VERY PROFESSIONAL AND INTELLIGENT!
added by crystal on 09.21.08 7:40 pm | Permalink
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