Don't Leave Me This Way: Questions & Discussion

Julia,

Have you won a settlement from the pharmaceutical company that made the decongestant?  I hope so.

Your book kept me hooked to the end to find out "who done it".  And I was right!!!  I figured all along it was the decongestant, since its purpose is to open up the blood vessels so you can breathe.  

Dr. Jerk was a real jerk!!!  How could he recommend  treatment with chemotherapy for you when he didn't  know what caused the cerebral hemmorage?  

I liked Dr. Renown who asked you "What do you think happened to you?" (pg. 287)  Ah, what a wise health care provider!  I have been a nurse for 32 years and I have learned that the patient knows.  I have also learned that with chronically ill children, the parent knows what is wrong more than any healthcare provider.  After all, the parent is with the child day in and day out.  THEY KNOW!

I  knew Dr.Renown was right!!!!--"What happened to you was from an outside source.  It wasn't anything that was wrong with your brain or your body.  I think you should keep listening to your intuition.  It's been correct all along." (pg.288)

Yeah for Dr. Renown!!!  He has a reason to be "Dr. Renown"!

Janet

I enjoyed your book.  I have passed it along to another friend to read who is also a nurse.  I think it makes me take a look at how I treat patients and will pass along to my nursing students.  I think it is great that you are doing well and have over come so much.  Your positive attitude and your " stick to it " approach worked so well.  Wish I could spread that along to so many others.  Thanks, Susan

• How do you feel that often you're not only a caregiver, but an advisor as well to the patient and the patient's loved ones? ....This is one of the many roles of nursing that goes with the territory when you embrace nursing equally as a “calling” and “a professional career.”  The art and science of nursing can not always be separate out.

• Swapping roles from nurse to patient, if you were being treated in your hospital, would you be satisfied with the care? ... Yes, if I were a patient in a Magnet Hospital, I would most likely be satisfied with my care.

• Do you ever find yourself 'labeling' a patient? For example, I had several labels attached to me during my long stay in the hospital--impulsive and impetuous, in denial, and stroke in 417? ...No, I never label clients…and when colleagues do this, I attempt to finds ways to point out that this practice is unfair to clients.  Often during report, nurse given personal negative descriptors of clients. However, once I begin the care, I find a totally difference person and begin to wonder exactly who the nurse took care of

I'm only partially through the book. The author has recently been moved to rehab. Your descriptions of your feelings are so clear, you put the reader in your head. I am so sorry some of the nurses were uncaring. Just being unable to get up on your own is frightening enough but when you know nobody is going to answer your call, it's got to be doubly frightening.  In a better world, we'd all have the time and inclination to be there for our patients, sadly, some people either don't care enough or they are burnt out.  If only hospitals staffed better, if only insurance companies cared about those who pay them premiums, if only the government didn't require you to chart triple the time spent caring for pts., we might have more compassionate caregivers but without universal  health care, we'll continue to have Dr. Jerks and Nurse Dooms - scary thought.

I am an "old nurse" going to my 55th class reunion next month.  I so enjoyed your  book and am going to recommend it to a friend who was a Nurse-Midwife before a tragic fall that left her  with partial paralysis. She will certainly be able to relate to your experiences.

I too was at times a little taken back by your brashness, but hey, whatever works!  

I find it amusing  that Barbara picked up on your labeling all of the health care providers but what is good for the goose is good for the gander. You are amazing!!

Julia,

I thought your book was great!!!  I Could relate to your position

from both sides.   Myself being in the medical struggle.  Having

finally getting dx after  3 yrs  with   Fibromyalgia and CFS and chronic lyme.  Which

at times we have neurological problems similar to  a stroke.  

Unfortunately as a nurse I know that your experiences are

common.  Do to lack of staff or  burned out "uncaring"

staff.   Which is SAD!!

My husband gets so frustrated at me at times!!!   So I reported

to him how patient your  husband Jim is!!!!

I could relate to your blow up with the radio playing and family

members talking at once.   I've experienced the same  and have

blown up myself!!

Unfortunately when I fall I fx things!!

Pray for more compassionate nurses and especially  MDs!!

Some treat nurses alot worse than patients!!!!

Mary  RN

Rhode Island

I have to admit that I am struggling to get through this book.  I tell myself that it's because part of it is written in 'you' format...telling ME how to feel.

Kind of ironic don't you think?  

I put the book down frustrated and angry.  I walk away, saying I'll read more later.  The truth is, the book hits close to home.  Am I one of those nurses?  Could I be someone who labels?  And the answers are sometimes more than what I am willing to look at.

So, Julia, I will continue to read it.  Please know that your words are doing something very powerful in me and I thank you.

Sophie,

While I respect your compassion as a new (&fresh) nurse, Julia was doing to her caregivers exactly what healthcare professionals (not all, but some) do to thier patients.  I thought that her humor and sarcasm was great, albeit a cover for her suffering.  As you become a nurse for a longer period of time, you'll understand and find that some caregivers are not as caring as you.  

With all due respect, I have to say that the little time we spend with our patients as nurses and the covering up that physicians do is not related to them personally, but to the environment which has become healthcare today.

I could relate to many of the things that Julia went through: people talking as if Julia was not there, ignoring her needs, not listening to her, insurance limitations, labeling her, etc.  I was amazed at her fortitude to get back to becoming independent again. She never gave up no matter how many obstacles she had to surpass.  I do know a positive attitude and humor help a person get through many hurdles in life and admire Julia for never losing these.

Sophie: I have read and reread your comments and I am still mystified. Can you truly have no clue how frustrating it is for a patient not to be able to move or communicate? Imagine a doctor telling you he is not sure what your diagnosis is but he's going to recommend this treatment and then not being open to you as a patient seeking a second opinion? I believe as you work longer as a nurse, you'll begin to gain an understanding of how a patient feels. Acting out of a patient is not a sign they are rude, it's a sign of frustration, and hopefully you as a nurse will be able to pick up on those signals and listen, really listen to the patients concerns.

Kudos to you Sophie for being such a remarkable, compassionate caregiver. If all my caregivers had your attitude, I wouldn't have had to write the book. I hope your Florence Nightingale spirit remains intact 5, 10, 15 years into your career.

The nursing profession requires much balance--especially with the 'burn-out' factor due to the shortage of nurses and managing the natural personal stresses in their own lives. These obstacles and others, while maintaining excellent care, makes the nursing profession more complex and strenuous than many other vocations. To compound it, nurses are dealing with many individuals that are facing all types of adversity (physically and emotionally)--which can cause even the nicest people to be irritable, scared, and demanding.

I have enormous respect for the medical community. I did not write the book with the intention of bashing the medical community. From my own personal experience, I felt that there needed to be a wakeup call for preserving and continuing to integrate humanity into the treatment.

As a new (& fresh) nurse, I was shocked and disgusted at the sarcasm, rudeness and disrespect that JFG showed to her caregivers.  With that blunt retorting attitude, no wonder caregivers "stare" at her, "write on their "ubiquitous clipboards" and "disappear".  I have had only one patient who was a challenge, probably because I would never label patients in a negative way, always try to enter their room knowing that they have needs and families and lives just like me, and deserve listening to and respect.  I hope I NEVER face a patient like her, and if I do, I view it as a challenge to make a bright spot in her day, and leave a smile on her face. I was repulsed by her sardonic uncooperative behavior.

During my career as a staff nurse, I worked on a neurology unit with a comprehensive stroke unit.  I thorougly enjoyed this book from both the patient's perspective as well as the individuals involved in her care.  I have to say that I became very "burnt out" working in that enviornment.  The patients are extremely challenging and I have since become an instructor.

I think that the nurses must be the advocate for the patients.  I've seen too many times physicians not explaining things to patients and not listening to their concerns, needs and desires.  Is is then up to the nurse to be the voice of the patient.

I spent some time in the emergency room of the hospital in which I worked, and I would never go back again.  I was an employee and they treated me with ill respect.  I can't imagine how they would treat someone who could not speak for themselves.

Unfortunately, we label patients all the time.  It is not a good practice, but sometimes with the workload and time constraints that  nurses face today, we must use room numbers or diagnosises, which I thought was ironic in the book, since Julia "labeled" all the healthcare providers that came in contact with her.

I am extremely happy that I chose the profession of nursing.  I think you need to be young, have energy and have compassion.  I love being a nurse and have found a way to use my knowledge, compassion and understanding with patients as well as those future nurses that will be caring for those same patients.

I had major neurosurgery some years ago and I felt like I was reliving many parts of it as I read this book. As a nurse/patient, I was very disappointed in the care I received at a MAJOR hospital in the Midwest. The further I moved from critical care, the poorer the care became. I couldn't move on my own, and no one would move me unless I demanded. I came away with a very different perspective on nursing. Unfortunately, I can no longer work bedside because of my injuries, so my newfound perspective isn't utilized.  As a future instructor, however, I will expect compassion from my students.