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.