In 1995 I became a Licensed Practical Nurse (LPN), and since then I’ve spent all but one year of my nursing career working in nursing homes. In terms of what one can experience in that setting, I had a wide-ranging experience there. I was a charge nurse on the skilled-nursing unit primarily, but I worked all over as needed. I frequently served as team leader, treatment nurse and even house supervisor in an extreme circumstance. I recall several co-workers commenting that they wouldn’t do what I’m doing without an increase in pay. The fact is, the experience was more valuable to me than a few dollars. You see, the funny thing about organizational hierarchy, and this is especially true in nursing; it’s frequently perceived that the person one step above you isn’t really doing much! LOL! I really enjoyed the increased responsibility and embraced the challenges they presented. Additionally, I was proud of the trust that administration had in me! I eventually made it to department head of a program which I helped to develop, the Restorative Nursing Program.
The best part about these experiences was serving the residents (patients) in a much more in-depth way. In addition to their medical needs, I was able to positively impact their psychological, psychosocial, nutritional, recreational and functional mobility areas. I even assisted in educating family members concerning their loved ones; helping with conflict-resolution, decision-making, and providing a sense of clarity. It wasn’t the easiest avenue in my field but I loved it!
Now I’m on the receiving end of the nursing process in the most extreme way! Having cared for many residents like me, complete/total care, the change in perspective has been drastic! As a nurse, I relate to my experience on various levels. The following are some of the revelations from my perspective turnabout:
1) If you’re unable to or have difficulty communicating, people often expect more patience with their attempts to interpret you than they have available for your attempts at communicating.
This is a tricky issue and tough for both sides. I can recall many instances when a resident became upset because I had difficulty understanding what they were saying. I tried various methods to make it easier by allowing them to write, allowing them time, even obtaining help from people known to have success with interpreting that particular resident. What I’ve found is most people don’t have much patience in that regard. Though it’s understandable to a degree when in a hospital setting, where you have multiple patients with pressing needs, but I’ve had nurses come in, turn my call-light off and leave without even attempting to discern what I needed. In the home setting where you mix in untrained family members, fatigue from full work-days, children, other family dynamics, their own physical and/or medical needs; things can become challenging for everyone
Over time, you simply stop expecting EVERY need to be met. I adjusted my expectations to deal with certain issues like minor itching and discomfort. Now you’re not having nurses avoid your gaze as they pass your room, and reduces the strain on the family and friends that partner in my care.
2) Regardless of the time of year, urine gets cold extremely fast, especially when you’re laying in it.
I am very fortunate this regard in that it’s only happened on a handful of occasions in the three years I’ve been sick. Of that handful, only once was a case of the “I can’t hold its”. The others were nursing gaffes during which I was either deprived oxygen long enough to induce a sort of pre-fainting release or unattentive urinal handling (smh). I can recall beginning shifts with CNAs reporting that they were finding residents surrounded by rings of urine, (for the uninitiated, that’s usually indicative of length of time and/or how many times they urinated since being changed).
I have a new understanding of the utter degradation and humiliation of what that feels like! If it were a regular and routine occurrence I don’t know what would be worse, the constant degradation or the eventual acceptance and resignation to it.
3) For those of us who can communicate; when folk ask you how you’re doing, 75% wanted a brief positive answer like “Doing well!” or “Blessed by the Best!”. Another 20% can tolerate a brief negative response like “Not too good today.” or “I’ve been better.”. Very few people really want details either way.
I have to offer this caveat, 95% of my communication is done online and most people don’t have time for long conversations during their drive-bys on Facebook and other social media. But I noted this long before I became ill. People generally don’t want to be bogged down with the gravity of one’s day. Especially dealing with their own stuff, or perhaps trying to sustain their day of positivity. Either way I got it! The world doesn’t revolve around me and my issues; only MY world does! That’s partially why I started a blog, for those few who want details! I reserve FB and the like for generalities and prayer solicitation.
4) Focusing on others keeps me from dwelling on myself.
I remember the day quite clearly. February 14, 2011, around 1:00pm the telephone call came through informing me of the possibility of a diagnosis of ALS. I sat still for about an hour or two. Then, I reluctantly researched and familiarized myself with what ALS entails. From then until now, there’s been few surprises. Occasionally, looking at my situation can get me down but I’ve found that focusing on others is key to overcoming that. When I see people expressing hard times, I say a prayer, send a message or both. I’m always cognizant of the fact that things could always be worse. A few years ago, I don’t know if I would’ve believed that it would be possible to be here, and not be chronically depressed. My Lord has certainly kept me!
5) There is power and comfort in the human touch of love.
As different aspects of ALS have overtaken my body, one thing has remained steady. The touch of those who truly love really makes any day better! The absence of loving touch, especially for someone who’s paralyzed, can be a brutal, dehumanizing blow! Consider how often you rub your hands together in a day, scratch your head or rub your nose. Now think of no touch, save what’s medically necessary. It would be horrible. When I was in the hospital, I had family that would simply hold my hand, or rub my feet for their entire visit! The warmth and comfort it provided was immeasurable!
Ultimately, there’s one lesson that supercedes all others. God’s power and presence is the prevailing reason that I thrive. Whether through scripture, song or prayer; He’s the source of my joy! Jesus is definitely the reason that I can still smile through this, my season!