Resident Rights vs. Human Rights

Just about every nursing facility has a list of "Resident Rights." This is a list of rights that any person that lives in a nursing home should be able to voice at any time and that the facility and all of its employees must follow at any given time. These lists are all fine and dandy in theory, but what are not posted or communicated are the list of human rights that one has to give up once they become a resident in a nursing facility or any of the consequences that will be faced by employees for violating a resident's rights. Below is a list of resident rights posted at the facility in which I live. I have color-coded the 31 items to reflect how many of them have been violated in my own treatment in the last six months (in red), how many I have seen violated in the treatment of other residents in the facility in the last six months (in blue), and the number of rights that have been violated on others as well as myself (in blue with bold font).

Resident's Rights

Every resident living at Chandler Health & Rehab has the right to:
1. Exercise their civil and religious liberties.
2. Be informed of their rights, privileges and rules and regulations of the nursing facility.
3. Be informed of the bed reservation policy for a hospital visit.
4. Be informed of services available and the costs associated with those services including those charges not covered under Medicaid, Medicare, or VA and the basic per diem rate.
5. Be informed of their health status, including diagnosis, prognosis, significant changes and planned treatments.
6. Participate in or refuse to participate in any treatment.
7. Issue advance directives such as Durable Power of Attorney and Living Wills.
8. Receive a prompt response to all responsible requests and inquiries.
9. Be transferred or discharged only after a 30 day written notice for medical reasons, the welfare of other residents, and/or for nonpayment.
10. Be encouraged to establish their rights as a resident, file complaints and suggestions without fear of retaliation.
11. Receive appropriate healthcare, medical treatment, and protective support services.
12. Be treated at all times courteously, fairly, and with the fullest measure of dignity.
13. Manage their personal finances, if possible or if delegated, to receive an accounting of every month upon request.
14. Be free from verbal, psychological, physical, and sexual abuse as well as financial exploitation.
15. Refuse to serve as a medical research subject.
16. Have their personal, financial, and medical records treated as confidential.
17. Be treated with consideration and respectfulness of their personal privacy.
18. Refuse to perform work.
19. Receive personal mail unopened.
20. Take part in various activities of the nursing facility.
21. Have their own clothing and possessions as space allows.
22. Use tobacco products in accordance with facility policies.
23. Consume alcoholic beverages with physician’s orders and oversight.
24. Have privacy for visits with their spouses. Spouses who are residents in the same facility are permitted to share a room unless one of their physicians documents reasons why such an arrangement would have an adverse effect on the health status of either resident.
25. Have their choice of pharmacy and physician.
26. Have the opportunity, at reasonable hours, to visit with family, friends and clergy in private.
27. Retire and rise as they choose.
28. Be free from physical and chemical restraints unless medically prescribed.
29. Review and/or have photocopies of their records made by the facility and name those individuals to whom records may be distributed to.
30. Have access to a public telephone and have their conversation in private.
31. Have a copy of these Resident’s rights prior to or at the time of admission.

Live and Let Die

"Welcome to Laurelton, we are so happy to have you come live with us."

It was one of the first things said to me after gracing the doorstep of the nursing facility that would become my abode for the unforeseeable future. Unfortunately, the phrase was a bit of a misnomer.

The nursing home is not where you come to live, it is where you come to die. I do not mean to sound melodramatic or harsh, but very few people that come into an institutionalized situation such as the one I found myself in on December 7, 2006 ever leave that facility or the nursing home system. There is a part of the building in which I live (notice that I choose not to call it home, because that word implies that it is a place of comfort and reverence) that is a rehabilitation and physical therapy center in which people are only present for stays of short duration, for the most part an enormous percentage of the residents will live here until they are either carried out on a stretcher in a body bag or will leave for the hospital and never come back alive. It is merely a way station between abandonment by one's family and one's eventual demise.

I could not even allow myself for a second to imagine that situation for my life. How could I imagine living another three or four decades surrounded by octogenarians who had lost their grip on reality and been reduced to shells of the people they had been when they contributed to both their families and society. How could my dreams be reduced from grandeur, success, and accomplishment to merely the simple fantasy of an extravagant dinner rather than the bland sustenance that graced the black and scarlet meal trays that left the kitchen three times a day.

My original plans were to finish my bachelors degree, write the Great American novel (making myself instantly famous and wealthy), and then leave this godforsaken place in lieu of a beach house in Mexico where I would have a militia of beautiful Mexican women take care of me for the rest of my days while drinking nothing but spirits with umbrellas in the glass. I had forced myself to give up on the dream of recovery from my injuries. I had given up on the dream of a cure for paralysis. I had no disillusion that my family would ever come to their senses and come back to rescue me from the hell that I was facing. My stepfather had made it oppressively clear over the past decade that not only was I not welcomed in my own home along with those that shared my genetic makeup, but he was under the guise that I was the sole reason his life had not led to riches, happiness, and success. I was gladly biopsied from the family that he now claimed as his own under the firm belief that I was the sole malignancy in the life he had always pictured in his dreams. I was nothing more to him than a source of income that he had dried up and, therefore, I was of no longer use to him or HIS family. So he sold the rest of his family on the idea that the situation had called for me to be discarded. It took a decade of constant bombardment of these views to finally tenderize the heart and minds of my bloodline to accept, but that is the situation that led me to the prison that I now faced.

My only solace came in the evenings when I could pull a blanket over my head then daydream. Those dreams were constructed of reliving an ever-growing cavalcade of timelines of my life if allowed to return to the fully functioning body I once had 15 minutes before I fell off the balcony forever dooming me to a life that led to my current imprisonment and reliving the previous 10 years as a constructive member of the able-bodied world. This was my only entertainment and perhaps the sole function that that kept my sanity intact. The few instances that I would find myself alone on the back porch of my stockade and would hear the not so distant sound of the train whistle I would long for the ability to slip from the gray walls and linoleum of my captors to find a place to park on the train tracks and await an impact that would free me from this reality.

I had not come to a nursing home to live, I had come to a prison that would contain my body and suppress my soul until a miracle would free me or death would come compassionately calling. I have not had caregivers that nurture and take care of me. I have had underpaid and overworked corrections officers that have taken out there frustrations upon myself and my fellow prisoners. I did not come here to live, but barring a miracle this is where I will die.

Not a Typical CNA, an Example of a Good One

When I entered into the nursing home system on December 7, 2006, I was going through a gambit of emotions. I felt as if I had just been abandoned by my family. I had been removed from the community that I was not only comfortable in and been unable to run around freely for a decade, but was full of friends and had served as my most valued support system. Being forced into a nursing home is one of the most feared predicaments for anyone with an extensive physical disability. I was entering an alien environment which I had feared since my injury and that was full of the types of people that I had been extremely phobic about since being confined to a wheelchair (anyone with a diminished mental capacity). And I would have to get used to a completely different and random cavalcade of caregivers. To say the least, I was mortified at the prospects of my new situation.

One of those issues, getting used to different caregivers, continues to be a challenge in my life due to the rapid turnover rate in employees at my facility. But the very first day I came into the nursing home I was matched up with a very – let's say unique – CNA that we will call Jane Doe. She is big, loud, over-the-top, and unapologetically inappropriate. But, once one has a chance to break through her tough outer shell of her personality, she has a tender heart and generous soul. But on that first night it certainly did not seem so. You see, I am a man of routine and habit. It was not so before my injury, but it is a necessity when it comes to regulating and controlling my care. I spent more than three months in the hospital after my injury, over two months of which were at a physical rehabilitation center. There was no disputing that at this rehab center the focus was not on trying to help me gain ground on the amount of control I had on my body. That ship had sailed. I have a complete spinal cord injury which means that my spinal cord was severed completely and that there was no hope of ever regaining any of the function or nerves below my collarbones. So, while I was at this rehab center I was to learn every minute detail of how to perform my care so that I could direct others into doing so for the rest of my life. I had to direct every caregiver how to stretch my limbs and digits every day. I had to explain exactly how to give me sponge baths so that I will not get wet enough that my body temperature might drop drastically and beg caregivers not to bathe so hard on my shoulders or collarbones due to those body parts being where I begin to have sensation and are very sensitive to touch. I have a system for rolling me in bed from side to side that not only is comfortable to me, but was designed by physical therapists to be the least strenuous on the person rolling me. Brushing my teeth and washing my face should always be done at least twice a day for two minutes, as my dentist insisted, and there is a thousand other different other systems of routine that I had been having my caregivers perform for 11 years. Not only was this the best way of taking care of me, it was all I knew about my care and all I had to offer to the person taking care of me other than a promenade of "thank yous", "pleases", and other expressions of gratitude. These routines sometimes clash with the routines of many CNAs and become a struggle of wills between us. Jane Doe was no exception from these battles.

Jane Doe and I were the same age but we had very different life paths. Whereas I was a wild young person yet responsible enough to stay away from teenage pregnancy and able to get a good education. Jane had children at an early age without much participation from the father(s) and had doomed herself to a life of backbreaking work and meager salary. After I got used to her and she to I, we were like peas and carrots. We were fast friends and each serves as the other's emotional punching bag to this day. Although we do not get to see each other very often these days because she left my facility to work at another and only works at my facility on a PRN basis, I still consider her a close friend and hope she feels the same way about me, which makes the following even more difficult to write.

Burnout in direct care employees has become a major research area for me in the past three years. Not only is it a subject that I research in journals or textbooks, but it is something that I witness with great regularity in the facility that I unfortunately have to call home. As a matter of fact, a partner and I have performed inservices with nursing homes on how to prevent, treat, and recognize burnout in CNAs, the effects of burnout, and specifically how it impacts quality of care in nursing homes (our website on these issues and more can be located HERE).

Jane is a perfect example of burnout. She has a tumultuous home life. She is a single mother of four and, at the age of 39, is a grandmother by one of her teenage children. She spends quite a lot of time taking care of the grandchild while Jane's daughter (and mother of the child) does everything from jumping from miniscule part time job to part time job always at fast food restaurants to going out with her friends as if she has no responsibilities as a mother. The teenager is a high school dropout. Jane's other teenager, a boy, is in trouble on a constant basis with the law and has been expelled from the school bus due to fighting and leaving Jane scrambling for ways to get him back and forth to school before he drops out or is expelled. Her next child, also a boy, seems to find great amusement in the behavior of his older brother and Jane is plagued by the thoughts that he will follow the same path. On the work front, Jane works a full-time, 40 hour a week job as a CNA from 7 AM – 3 PM in one nursing home then four or five days a week she drives 45 minutes to an hour to another nursing home where she works until 11 PM and then drives 45 minutes to her home. What little bit of social life she had disappeared when she became a grandmother causing her to see no social or romantic relationship opportunities. The few men that she has had relationships with are quickly chased away because she cannot spare the time to show them the attention that they crave or receive from Jane. She is physically exhausted from morning to night every day. She has a very short fuse and is irritable at both work and home. After over a decade in the medical field she feels as if she is not doing a good job anymore. She has a pessimistic attitude in nearly every situation that arises. And finally, even though she works as much as 70 hours a week or more, she struggles to put food on the table for her family every night and is heavily in debt due to high rent, medical bills, and automobile payments.

Luckily, Jane realized that she needed some sort of psychological and therapeutic intervention before she had a nervous breakdown or even worse. What finally drove her to seek out therapy was when she realized that she could go from jocular laughter to depression and tears on the turn of a dime. Her insurance would only pay for a single, one hour visit to a psychiatrist once a month (which she was still having to pay for more than half the therapist's fees). The doctor, which Jane readily describes as inattentive and preoccupied with things other than care, simply prescribed her a cocktail of antidepressants. Each month she visited he would listen to her for around 15 minutes of a one hour session and up her meds. At this point she is so overmedicated that she cannot sleep and rarely eats.

Though Jane has not been my CNA except for a few nights in the past couple of years, I worry about the welfare of her patients. There is a direct correlation between burnout and abuse in nursing homes. If Jane Doe was not such a good person at heart, it would be very easy to imagine her taking out her many frustrations on the very frail but demanding recipients of her care. The saddest thing about Jane's predicament is that it is not at all unique. A large percentage of the CNAs at the facility where I live are mothers who are working multiple jobs and barely able to keep their heads above water. After reading the information on the website on burnout that I sourced earlier in this blog entry, does this make you worry about all of those CNAs in brightly colored scrubs you leave your loved ones with day in and day out? Does it make you think twice about putting your aging or disabled family members in any of the tens of thousands of nursing facilities that are financially thriving off the warehousing of an entire generation?

I Got Caught in a Trap That I Never Saw Coming

In a moment of weakness that preceded this visit by nearly 10 months I called my mother and stepfather into my bedroom where I lay motionless on a hospital bed. After nearly 11 years of having my self-esteem torn down by the ones who were supposed to care for me the most, I gave in. I do not remember the exact words, but I told them that I would go into a facility if it met two standards; 1) that there were people like me there and 2) I could come and go as I please. By the phrase, "people like me," I meant people who had suffered injuries similar to my spinal cord injury that left me motionless below the collarbones at age 19 but 100% aware of the world around me. I meant relatively young people, those that had complete cognitive awareness and could express it, no octogenarians that had lost their minds years before, no one relying on machines for each breath and pump of the heart, and I definitely did not want to be surrounded by vegetables. I had come across a multitude of these people throughout my years confined to a sip and puff wheelchair. These poor people that are pushed around by their parents through malls and at ball games were like magnets to a person in a chair that could actually converse. They sit there with emotionless stares as mom and dad speak for them in childlike voices. Call me a snob or an asshole, but just because life trapped me in a wheelchair it did not make me the goodwill ambassador for all things handicapped.

Do not get me wrong, I never once acted as if I was being imposed upon by the rubberneckers that had to know every detail of my life from injury to bowel program and all points in between. On the contrary, I bent over backwards to cater to every one of these people because I knew of the terrible pain that they suffer every day. How could I ever deny a middle-aged mother with tears in her eyes as she described a car accident or fall that froze her child's brain in a constant state of neutral? I always have stories of hope and grandeur tucked away between the folds of my mind just waiting to tantalize the slightest glimmer of belief she might have for a more positive future for her and her beloved child. But I do not want to live my life surrounded by every still life model of catatonia.

But I did say it. I said I would go if my standards were met. Yet as soon as I said it the words were already forgotten by me – but they were not by my parents. Months went by and there was not as much as a word about going into a facility. October rolled around and I went to a new neurosurgeon at the University of Alabama in Birmingham because the pain of the hundreds of pieces of bone, four titanium plates, 25 screws, and six bone grafts that made up my cervical spine had come to a point where something had to be done. I would not spend my life a slave of opioids to dull the pain as my father had been, but perhaps there was something that could be done. After a couple MRIs, x-rays, and CAT scans the surgeon came back to my exam room with the news that something had to be done and immediately. He claimed the next bump I hit on the red brick roads of the University I attended could be my last. My spine could just collapse causing me to suffocate.

To tell the truth, a majority of my consciousness hoped that this was the opportunity to check out on an outlandishly miserable existence. Perhaps the surgery, which was being performed on the 11th anniversary of the injury that ruined my life, was a godsend. No such luck. Even with a high probability of losing my capacity to breathe on my own (which would automatically call for the doctor to turn off the ventilator after three days per my living will) I came out of the four surgeries and 14 hours on the operating table with my only major problem being fluid that had settled in my lungs. After a few days I was even able to get up in my wheelchair and roll down to the cafeteria with a friend to pick out my dinner. But something was wrong, my neck was stable and gave me very little pain, after a few days my lungs cleared up, but why was I still in the hospital? After the dozenth or so time I asked my surgeon he told me that my parents were shopping me around to nursing homes without my knowledge. I was devastated. Luckily they were having no success due to my young age and extreme level of disability. So after another week I went home to the hospital bed in my home. I felt content that there was no way I was going into any type of facility and I prepared to return to my studies towards a BA in English/Creative Writing.

Just a handful of days later my stepfather asked me to go for a ride with him. He did not mention where until we were in the van on the way to a nursing home about 20 minutes away from my hometown. He said he wanted me to give it a chance. I should keep an open mind. I could feel the hair standing up on the back of my neck signifying that my blood pressure was climbing. This would have to be one state-of-the-art and active place full of twentysomethings and college students hell-bent on living independently and contributing to society.

We entered the lobby of the facility to the open arms of an administrator that stuttered his way through an introduction. He called over a female coworker in a pantsuit to give me the tour of the place. As I left the carpeted office space in my tires squeaked on the linoleum floors I passed by woman after woman in scrubs going from room to room while talking far too loud. I could not help myself from looking in every open door. Each dimly lit room hid its own little horrors. In one room may be a man drooling his pudding down on a bib obviously designed for a two-year-old and another so dimly lit that all visible to the naked eye were two emaciated legs bent up in the air. As I turned and traveled down one of the long halls of the warehouse I was violently struck by the bounty of unique, rancid aromas that I would soon learn to be the bouquet of dozens of elderly people all sharing the effects of laxatives. The smells were only compounded by the wet floors caused by traffic in and out of the cold, rainy day.

I had absolutely no intention of spending one single solitary minute in this place than absolutely necessary, but patiently waited out the tour. I felt as if a diver struggling for a breath of freedom by the time we reached the carpet once again – only to find the administrator and my stepfather shaking hands and stuffing away signed documents into folders. In a moment of weakness just days after my injury I had given my stepfather power of attorney so that he could handle my affairs and he used that power of attorney to imprison me. There was nothing I could do. It did not matter how much I protested, the die was cast.

There are many dates that stand out in my mind, but few are as regrettable as December 7, 2006. Just a few days after I had toured a facility that represented every nightmarish probability that my life lead me down, I entered Room 221 as the youngest resident in the facility. Perhaps the most disturbing part of the emotional roller coaster was how ecstatic my parents, my sister, and my brother were to have me move out of the home that I had helped design just a few years earlier. Soon my family would sell all of my furniture and collectibles at a yard sale using my room as a storage bin for their bicycles until they sold the entire house and moved out of the only hometown I had ever known. I did not leave my bed for several days, and when I did I was nearly brought to tears by the multitude of roommates that lined the halls and nurses' desks. Most of them were just shells of the people they had been when they were my age and the few that were a bit cognizant of what was going on would constantly reach out for me as I passed. The only people that were sane, the employees, walked by me from the right and left staring at me from toe to head yet not saying a word. Hell had just begun.

Autonomic Dysreflexia, Mark it Down, Could Very Well Be My Demise

It is the bane of my existence and perhaps the most dangerous medical condition that affects those with spinal cord injuries – autonomic dysreflexia. If bodily functions are monitored and maintained properly it can hardly an issue, but as you will find out in this blog, it can be life-threatening if not treated as the emergency that it truly can be.

Autonomic dysreflexia (AD) is a malfunction of the autonomic nervous system brought on by a pain sensation where a person with a spinal cord injury has no sensation. It is mainly caused by episodes in which a urinary catheter becomes blocked causing the bladder to distend to abnormal sizes and triggering full on AD characteristics. AD can also be brought on by bowel obstruction or impaction, hemorrhoids, or a number of painful stimuli that attack the body. The main characteristics of AD are an extreme pararoxsymal hypertension (an extreme and sudden onset of abnormally high blood pressure), profuse sweating from head to toe, low pulse rate, flushing of the skin, and (due to high blood pressure) a headache that is indescribably intense and overwhelming.

After years of having an indwelling Foley catheter and the constant urinary tract infections that go along with them, I suffer from bouts of AD on almost a weekly basis. There are rare instances where the effects of this malady are caused by bowel obstruction or even passing kidney stones, but the most often culprit of these attacks is from sediment produced by my kidneys clogging my catheter and “backing up the plumbing.”

Within 20 minutes there is a risk of stroke and/or heart attack and with each second that passes during these attacks one’s blood pleasure continues to climb. Needless to say, the faster a resolution is found to this situation the better. AD can be overcome by nothing more than a simple flushing of the catheter with sterile saline to unblock the clog of sediment or, in many cases, the changing of the Foley catheter. Unfortunately, autonomic dysreflexia is not a common occurrence in nursing homes, so the knowledge of how to solve this issue is not widely known by medical staff.

Just to jump out of the flow for a second, I would like to describe my rehabilitation. After spending nearly 6 weeks in an ICU in Montgomery, Alabama I was shipped to Lakeshore Rehabilitation Hospital near Birmingham. There were no illusions to what I would be doing at a physical rehab hospital, I would not be rising to my feet after a couple of weeks of physical therapy to defy the odds and walk out of the facility on my own volition. It was pounded into my brain over and over that I was a “complete injury,” which meant that my spinal cord was severed at the third cervical vertebrae and thus I would never regain sensation or use of the muscles below my collarbones ever again. I was to spend the next 8 to 10 weeks learning how to teach others how to take care of me. I had to learn each step in the process of doing my range of motion every day to prevent the atrophy of the muscles that I could not use starting at the pinky finger and covering every muscle down to my pinky toes. I had to learn how to talk a complete novice through the steps of bathing my body, emptying my catheter bag, transferring me from the bed to the wheelchair, and every other minute step necessary to keep me healthy. And yes, autonomic dysreflexia and quad coughing were most definitely part of the curriculum I had to pore over daily. One of the main responsibilities I face is making sure that I can not only communicate this information to those responsible for my care, but that they understand me and can perform the steps necessary. With this said, I continue…

Just as it is important for me to know how to describe the intricate steps in relieving my body from the effects of AD, it is absolutely essential that the medical staff realize with what immediacy the situation must be dealt. That is not always reality living in a nursing facility.

A most recent occurrence that I can describe has to do with the nursing staff completely disregarding my directions and pleas for a relief of my distended bladder from a blocked catheter. When nurses start at the facility they spend three days in orientation. During this period they learn the ropes of whatever set they are placed on and the rules and regulations of the facility as well as abiding by the rules set forth by the state of Alabama. These orientees are extremely common due to the turnover rate in my facility. When a nurse is on orientation I make sure to introduce myself. I also try to find out as much information about them as possible. I am not being nosy, but if you can remember that a certain person has two daughters, two shih tzus, or has worked with someone familiar to you it can absolutely build a bond between the two of you.

When the most recent nurse that works the weekend night shifts was in orientation I made sure to cozy up to her and make conversation as often as possible while she was going through orientation. Although she was quite close lipped for the most part, I did find out that she had been a nurse for more than 30 years and had worked nearly every position a nurse could face with the exception of a nursing home. I took her standoffishness as just a personality quirk, but I had no idea how incredibly close minded and inept she would become until her second weekend working after orientation.

I happened to be sound asleep when I was awoken by sweat pouring into my ears and down the sides of my face. As soon as I became awake and lucid I struck into action. I hit my call light and within 15 minutes a CNA had answered it. I told her that my catheter was blocked and that I was already in the throes of autonomic dysreflexia with my blood pressure already out of hand. I asked her to please ask the nurse to flush my catheter. After 25-30 minutes the CNA returned when I again had to hit my call light. She informed me that the nurse said she was busy and she would get to me when she could.

“Please, please let her know what is going on (the CNA was no stranger to this situation) and the necessity to get this unclogged as soon as possible,” I begged.

After another 30 minutes I begged the CNA to get the other nurse that works on my unit to come and if she was occupied to please page the house supervisor, I was desperate for assistance. At this point my head began pounding with every heartbeat that flow through my body. For years I suffered from migraines, but a blood pressure headache is five times the strength of a migraine. My left bicep was causing my arm to flail around in front of me and I had long since sweat completely through my comforter.

Finally, after another 20 or 30 minutes the nurse came in empty-handed. I begged her to grab a 60 cc syringe and sterile saline to blast through the obstruction in the line. She looked at me cynically and reached down and picked up the tube that ran from my urinary catheter to the catheter bag that hung from the side of the bed.

“The back has urine in it, so it is not blocked,” she said with an impatient groan.

“I am sorry, but you cannot tell if the catheter is flowing by looking at the urine in the bag,” I responded. “That is like looking at a puddle in the street and saying that it is raining. That may not be so, it could have rained 15 minutes ago or three days ago. That urine could have been in there for six hours, but there is one thing that I do know and that is that my catheter is blocked.”

“How can you tell?”

“My blood pressure is through the roof causing me to sweat profusely and my head is pounding unmercifully,” I responded.

At this point she told me that there is no way for one to tell when their blood pressure is high and that she would not flush my catheter. I swore to her that this happens all the time and that I am accustomed to recognizing the symptoms of AD and that I was perilously close to having a stroke or heart attack due to the height of my blood pressure. Her solution was to have someone take my blood pressure despite my pleas for assistance.

Of course, in a nursing home of the caliber I reside in it took a massive hunt for another half hour before anyone found a blood pressure cuff. They took my blood pressure again and again until I finally asked what number they were getting. Every time they took my blood pressure the systolic number was over 210 and diastolic was over 150. They could not believe how high it was said they kept taking it over and over.

Finally, the other nurse from the unit (who had been distracted in the room of another patient going through medical distress) came into the room and simply said that I was correct and that if the new nurse would just listen to me that I know what I am talking about and that I know my body. Another 15 minutes or so and a syringe and saline were found. Before flushing my catheter the CNA emptied the bed bag completely. Once the nurse flushed saline up my catheter and dislodged the sediment a urine stream came gushing out into the bag and over 850 mL flowed out of my bladder.

The nurse came in a few minutes later with blood pressure medicine for me to take. I refused. Within five minutes of relieving the issue my blood pressure was normal, the sweat stopped pouring, and my headache disappeared. Yet when I told her this she became belligerent believing that I was intentionally disagreeing with her to make her look bad. I told her that taking the blood pressure medication would bottom out my pressure and cause me to pass out. She argued and argued with me – even trying to dump the pills in my mouth while I was speaking to her. Finally the CNA took my blood pressure and it was a normal 110/70. The nurse left the room in disgust.

This is but a single incident with this one nurse where I have been left in a position of extreme AD for up to and exceeding an hour. Excuses vary from not being able to come because she was making out the schedule for the CNAs, because she was in the middle of a medication pass and was not allowed to leave her cart (which is not true), or simply no excuse at all – just without empathy, scruples, or morals.

This issue is a constant one. Not only do nurses not understand the significant danger that autonomic dysreflexia poses, when they are reprimanded for not acting with haste they develop a grudge against the resident and become even more dysfunctional.

I have said it numerous times to the unit supervising nurse, Director of Nursing, and administrator of the facility that one day this would be my demise. Somehow they do not seem so sympathetic.

Excerpts from the following Wikipedia page is being used in this blog entry. The page on autonomic dysreflexia and can be found at the following URL:

http://en.wikipedia.org/wiki/Autonomic_dysreflexia

A Line in the Sand

Although I have spent eight years as a resident of the same nursing home, it was only early summer in 2014 where I had finally reached a point where I was no longer willing to bend when it came to my care. After a seemingly endless parade of events where I felt as if I had been treated unfairly and unsafely by the direct care staff, I drew a line in the sand and told myself, “No more.” This entry is about that decision and how it has changed my life.

The nursing home industry may be powered by direct care workers (clinical nursing assistants, nurses, etc.), it may be run by the administrators and owners, it may be regulated by state and federal agencies, but it is most definitely funded by the residents. We may not be signing our names on the checks of every CNA that wields a bedpan, but be not misled – the cash comes from the clients.

I lay in my bed one evening thinking about this. Thinking of when I became a resident and how the nursing home slowly drained every penny I had in savings and now takes my entire SSDI check each month only giving me $30 to spend. I thought about the hundreds of thousands of dollars that the institution had received through Medicaid and Medicare on my behalf yet does not even provide me with simple necessities such as underwear or decent razors. All of this money that is funneling into the pockets of every person on salary and each worker that punches the clock and yet I was constantly being forced into compromising my own wishes of how to be treated by each employee. Three shifts a day I had to cater my needs to malcontents who were stuck in their ways and had no regard for my wishes or how I wanted to be treated. “That is it!” I told myself. “This is going to change right now.”

My decision was to communicate to each person that entered my abode that, whether I like it or not, they are in my home and I would not accept being treated as if any less. When they hit that clock they are no longer in control of me. When they agree to accept payment for taking care of me they will do so the way I choose in my home. I will no longer bend over backwards to coddle their sensitivities and that their preferences no longer outweigh my own.

Do not get me wrong, I am a very compassionate person. I have every sympathy in the world for the incredibly difficult job that these men and women do day in and day out, but when it comes down to it that continues to be their choice to work here. They chose this job. Saying this, most of these workers are not only my salvation and lifelines, but they have become my friends and family over the years. I know their husbands and wives, children, birthdays, and life stories. Not only are they the people that bathe me, dressed me, and feed me, but they are also my social stratosphere and in many respects most of my entertainment. I value each and every person that takes care of me and try to express that to them every chance I get. But do not let these familial feelings usurp the main purpose of each of our roles. I am here because I require a level of care far beyond a normal, able-bodied person and they are here because they made the life decision that they would provide this care as their occupation. Unfortunately for most of nursing facilities these lines of hierarchy have been totally blurred. I had allowed it to happen in the way that I allowed people to treat me and I was ready for it to stop.

My day was inundated with comments such as, “I will when I get a chance,” “Give me a few minutes,” and “That is not the way that I want to do it.” Every time I would hear these excuses I was left wanting and needing something. Sometimes these things would be important and sometimes they would not, but it is the responsibility of the employee to take care of the resident. If I were in their home I would not expect them to humor my preferences. I would most certainly expect to have a completely different set of rules in that instance. But that is not the case. However humble it is, this is my home and I deserve to be treated to my level of expectations. For instance, I would not expect to be treated any more favorably than my fellow resident and I would certainly not want to take valuable attention away from someone that is in distress and in more a need of immediate care than I, but no more waiting for two hours for a drink of water, no more suffering through painful spasms or serious medical issues while a CNA hides in a mentally disabled person’s room watching game shows. No longer would I allow myself to be a victim of apathy and lethargy.

I spent an entire day going from office to office in the facility spouting my new manifesto. I talked to the unit supervisor, the director of nursing, and a multitude of nurses and CNAs, and I even went to the administrator of the facility to tell him exactly how I had drawn a line in the sand and would no longer allow anyone to brush it away for more lackadaisical behavior. After years in a place that I would rather meet my friends in the back parking lot rather than letting them see how I have to live my life and would always respond with the name of my hometown when asked where I was from by new acquaintances. This is my home and I am staking a claim on it and assuming possession.

It has been nearly 8 months since I made that decision. I have not veered away from it in the slightest. It is only in the last couple of months that I have really seen results. Most of the changes have been because of the rapid turnover rate of staff. It is much easier to tell someone on their first day of work exactly how I want them to roll me in bed to put on my clothes or to never mix any of the portions of food on my plate together. It is far easier to communicate to a nurse that, even though I am paralyzed below the collarbones and have no movement of my limbs, that I know my body and I know when something is going wrong with it. It could lead to much more jubilant life if I only had to deal with nurses and CNAs who are making their first voyage into the world of skilled nursing care as my caretakers. I wish I could say the same about many of the employees that have spent more time as direct care workers. Many seem to be single-minded in their approach and insist on relying on routine and old but consistent ways of doing things. I feel as if I am stubborn enough to continue to insist on being treated as a fully cognitive and (some might say) intelligent man of nearly 40 years of experience on the planet that I might even be able to transform the way each of the residents in the nursing home get treated. After all, I could not live with myself if I knew that I was being treated well at the detriment of my fellow residents.