Support Central
I’ve been blah-ging a lot about health care. I’m outraged at knowing what happens in the board rooms, in patients’ rooms, in the operating rooms and in the emergency rooms.
But I also try to help people empower themselves so that they have the tools and skills they need in order to make the best decisions about their health for themselves, their families, their communities and our country.
This evening’s offering is simply an introduction, of sorts. Share a little about your own health questions, your questions, and your needs. As a community, it’s important that we identify what’s needed, and then figure out how and where our own talents can support each other and move our agenda forward.
I’m a nurse by education and accident. As a high school part-time job, I was hired off the street as a nursing aide in a private, for-profit nursing home that was filled with residents who had been forcibly de-institutionalized from state mental institutions. I learned about tardive dyskinesias and EPS (extra pyramidal syndrome), and I also saw a family deal with Huntington’s chorea as the adult daughter was approaching the zero hour age of 35 – when symptoms either appear or they do not – either telling the tale of a horrendous decline to death or an escape from this still lethal progressive diagnosis.
In those days before AIDS and the routine use of gloves, I cleaned up incontinent patients without gloves, routinely washed out fecal filled linen and diapers with a high power spray hose, and I lifted heavy patients by myself because there were two aides for 33 patients on the night shift. I cleaned up a dead body at the age of 16. Death and dying is not a fearful or scary event to me, but it is supremely mysterious, sacred and I do what I can to help the dying person to maintain control and to have their wishes made known and honored. I hold the hands of the dying, and I do not look away.
During nursing school (a five year dual degree program which had been founded by a congresswoman, Frances Payne Bolton – can you say feminist progressive Republican congresswoman?!?!?!), I picked up part-time hours at one of the first progressive care retirement communities – Judson Park. I made many friends of the retired professors and local professionals who lived there, and I also took care of a lady by the name of Mrs. Riley, whose husband was the COO of the Heinz company in Pittsburgh. Mrs. Riley was a particular lady who was fiercely angry at losing any ability to live an entirely independent life.
However, in the course of dressing one morning, she pulled a photograph album out of her lingerie drawer, and I shyly asked if she had family photos.
Oh! Mr. Heinz had sent the Rileys on a four month long cruise around the world as his retirement present, and these were some of the photos – from Egypt, Europe and onward. She also had early photographs from before the turn of the 20th century of her own childhood home and family. She and I became friends, even as she tolerated my assisting her when her hands or arms wouldn’t cooperate with her will.
I always enjoyed working with and providing nursing for the elderly, and that’s where I thought my career would lead. However, I also liked all of the bells and whistles of the critical care units. There were more nurses to team with, and there were always exciting stories to tell. So during my last two years of school, I became a glorified nursing assistant at the affiliated academic teaching hospital where I had been taking my clinical rotations. In those days, as senior students, we could do almost all of the functions of a registered nurse under their supervision. I learned how to care for groups of step-down cardiac patients on my own with a nurse just a few steps away in the main medical intensive care unit.
But the lure of NYC was too great to keep me in Cleveland after graduation. My housing (24th floor apartment overlooking Lincoln Center with a million dollar view of the city) wouldn’t be ready until August, so I went back to my parents’ home and worked as the sole RN brand spanking new graduate charge nurse in the original nursing home where I had started. Now I had 111 patients all under my supervision – with two licensed practical nurses sharing the medication administration and wound care duties. But since I knew most of the patients from my summers and vacations working there, it was more like just taking one more step forward.
My career careened in directions that I never planned, but my interest has always been to empower patients, to treat everyone with respect and dignity, and most of all, to steward lives from birth to the end of life.
I’m now interested in speaking up for professional nursing and for patients. I do not have health insurance myself. I do have untreated health problems and under-treated health problems.
I have discharged patients to the street. I have protested to the extent that I have been able. I have blown the whistle.
It is not enough.
Your turn. What is your story?
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and I know you can’t diagnose. He is almost 86, has had multiple cancers, several strokes, is in congestive heart failure and has COPD. He has been in and out of the hospital since last February when he had his last stroke, and is now in a nursing facility, which seems to be a pretty good place. A few months ago, he had edema so bad that his legs and stomach swelled and he gained around 20# of fluid. He was put on drugs and lost the fluid and was doing well until he just started going downhill and went back to hospital and now to nursing home. He is now swelling back up and we can’t seem to get anyone to do anything about it. A nurse looked at his feet over a week ago, and showed us how to recognize edema, but we haven’t seen anything done about it. We are going tomorrow and plan to confront someone and demand to know what is being done, but are somewhat unsure of what to say. I need to add that he is mentally impaired because of the strokes and his short-term memory is bad, so he’s not always sure what’s going on around him. I would appreciate any suggestions you have for us. I understand that he is dying, but we want to keep him as comfortable as possible for as long as we can, since his medications are keeping him alive.
because I can’t get images to post in an essay. What is the secret code?
And good essay too.
diagnosed with cancer within the same week. Mom had Ovarian cancer and dad had Pancreatic cancer. Mom went down the chemotherapy path, dad went to Mexico to Dr. Virgina’s clinic.
Guess which one is still alive three years later? Yep, that’s right, Dad.
The oncologist that was in charge of my mothers’ case was conducting an ovarian cancer study to see if doubling up the chemo meds would create an effect or not. I have not seen anyone suffer so much or go through more humiliating, debilitating bodily function break-downs…..ever, it was unimaginable. My poor mother, may she rest in peace.
During palliative care, the nurses were very, VERY loving and supportive. They helped me immeasurably.
I was pregnant with our daughter at the time, and yes, my mother died the day my daughter was born. My water broke at moms house while I was giving her a foot massage, her breathing was very erratic and I knew it was going to happen that way.
I came away from that experience with a lot of anger for the medical industry, and I can’t seem to shake it. I am very weary of going to the doctors, or taking my children for check ups even. It’s very uncomfortable for me. Is that normal? It seems like most people put their lives into their doctors’ hands, unquestionably. I hope, with time I’ll be able to learn to trust a doctor again, maybe someday I will need to.
Luckily my children are excessively healthy, we juice, we don’t eat junk food, I make every meal at home and we strive for maximum health, perhaps just to spite the medical industry.