As a hospice registered nurse, I have encountered numerous heartwarming and challenging experiences throughout my career. One of the most memorable encounters was with a dementia patient, Miss Norma Jean Smith, who affectionately called me “Jack.” This endearing nickname, born out of her unique perception, became a symbol of the special bond we shared. In the following account, I will share the poignant journey of building trust, providing compassionate care, and embracing the unexpected moments of joy and sorrow in the life of Miss Norma. This story is a testament to the profound impact of person-centered care and the invaluable lessons learned from the patients we are privileged to serve.
The Story of Earning a Nick Name
One of the many lessons I've learned as a person, let alone an experienced hospice registered nurse, is never take yourself seriously; you need to be able to laugh at yourself as well as roll with whatever resistance you receive from various parties. Let me share with you some of my key experiences with a dementia patient who gave me my first “nick name” though for her, she thought of it as my name itself. The name used for the patient has been altered due to HIPAA.
For some background, all types of dementia are progressive leading to death, involve periods of disorientation, confusion, can involve hallucinations and in many respects the patient will be “child-like” in emotions, thoughts, and mental capabilities as well as acting as if they are in the autism spectrum. If you know how to lovingly treat anyone with any type of autism, you can do well with dementia patients most of the time.
So, I first met Miss Norma Jean Smith the day after admission for senile degeneration of the brain, Norma was in full isolation for the Human metapneumovirus; a respiratory virus that requires contact precautions (gown, gloves) as well as reparatory precautions (mask). So, if you can put yourself in Norma's shoes where you are delirious due to an infection, never fully oriented due to dementia and strangers coming into your room wearing a yellow gown and having a mask and gloves on…. Well, imagine being in a scary place where you are at your wits end with fear and going through the same thing. It was an exceedingly grim time for Norma.
Yet once she recovered from that virus and I was in a position that I could ignore the unscientific (C19) masking requirement that only interfered with the relationship while providing absolutely zero scientific benefit, I did so and we were soon on talking terms where Miss Norma would open up increasingly more each visit sharing snippets of her life which allowed me to provide improved care knowing her likes and dislikes and history.
Miss Norma didn't understand why anyone would take an interest in caring for her. In her own way of sharing, she presented herself as someone for whom not a single soul should care about… a misfit, a nobody, someone who was not worth the time or interest of another. She also shared that she used to work as a registered nurse in a medical surgical unit at a hospital in another state; and through friends, I was able to find out her rich history of being such a loving, kind, considerate, thoughtful, and gentle person. I found out she took care of her own parents when they could not care for themselves. She developed an educational program for the hospital that she worked, and was known for telling her coworkers and patients, “no one will die on my shift.”
Knowing this allowed me to remind Norma of things forgotten such as, “you've blessed thousands of people in your lifetime, you deserve to be blessed too!” …. You are just as special as each person you touched in your life. You matter! You are important! You are special! You deserve love and care, and I, myself, am blessed to have the honor and privilege to help. It did take several visits of these types of short conversations along with smiling and providing gentle care for Norma to start to feel comfortable with me being her nurse.
I would start each visit from the very first and for some time to come with “Hello Miss Norma, it's nurse Peter… I don't know if you remember me” (because with terminal dementia they can forget something that was said even 60 seconds prior). Though she would not, she would not refer to me by any name… sometimes I would be called a doctor (I'm not) and sometimes, “the nurse.” Yet, as she opened up more and saw the compassion and love for which I had for her through the course of her being my patient, she started calling me, “Jack.”
At first, I would try to correct her by showing her my work badge that has my name along with being a registered nurse, but after a while, I found it best to roll with resistance and accept the very fact I was being blessed with my first nick name. Once that mental barrier of mine was broken along with some loving humor from one of her long-term caregivers and friend who would announce me before I could speak, saying “Miss Norma, Jack's here…” and I would respond, positively telling Miss Norma that I missed her lovely smile and that yes, “Jack” is present to provide her loving, compassionate care.
Women, and especially those with dementia are at extreme risk for infections especially urinary tract infections (UTI), and while I'm grateful our care team including myself identified Miss Norma had a UTI, this is where the story goes from sad to happy to sad.
Problems Encountered
Hospice is a philosophy and not a location. When hospice occurs at home, the patient (if they are able) and the family are 100% in charge all the time. When hospice occurs at a facility, the facility and the facility provider have the ultimate authority despite any ethical or moral consideration. In this case I did my homework and presented the facility physician with the recommendation of Bactrim Double Strength twice a day (BID) for seven days. The doctor in question has a history of mistrust of field staff and a complete disregard (I feel so strongly about this issue and what the doctor did to the patient that I would put it all on the line to defend my position) for comfort at end-of-life was so focused on kidney function (all caregivers and myself were in agreement the patient had about eight weeks of life left to live) that she changed my recommendation to Bactrim single strength twice a day for three days.
While the patient did show improvement, which proved the right antibiotic was selected, after three days she started going downhill again with delirium and the provider refusing to start what I initially recommended to the point where the family was considering switching to the hospice medical director… but then tragedy struck… Miss Norma fell and the right hip was severed from the bone (being kept in place by skin) which resulted in Miss Norma going into shock and subsequently dying a few days later.
We were able to keep her comfortable throughout. The sadness and (yes, even) anger about the tragedy remained for some time. Yet, out of all of it, there was reflection about the silver linings of the case.
I was blessed with a nick name; I never had one, and now people close to the case still call me, “Jack.”
I was blessed to have known and cared for Miss Norma who was a remarkable woman who blessed so many people before she died.
I was blessed to have met Lindy, Linda, Ruth, Joan, Paige, and many others for whom Miss Norma blessed in her journey; and they, with and in love call me “Jack.”
Lessons Learned
What I hope to leave you, my dear friends, who are reading this article is with some blessings that you can pass onto others:
The best and most loving thing you can do for patients who are terminally ill, especially with dementia, is to see the person, not the disease. Smile at them, hold their hand, hug them, and let them know they are special, they matter, they have meaning, and you will not give up on them over the course of the disease.
Validation of feelings and emotions always matter. While every nursing school professor touched my life in more ways than words can express, Professor Rhonda Foertsch gave me the most valuable lesson: consistently and frequently validate feelings.
If you care about the ones you serve, you will strive to build the relationship which means getting over yourself. Roll with resistance and don't be so serious that you cannot laugh, giggle, or be outright silly. Do what serves them if it will not cause harm to others or yourself.
Conclusion
The journey with Miss Norma was a bittersweet yet profoundly enriching experience. Her endearing nickname, “Jack,” continues to be a cherished reminder of the meaningful connections we form with our patients. The lessons of empathy, resilience, and the transformative power of compassionate care that I learned from her will forever resonate in my practice. As I reflect on this journey, I am reminded of the importance of seeing the person beyond the illness, embracing moments of joy, and validating the emotions of those in our care. Through this narrative, I hope to inspire fellow caregivers to approach their work with an open heart, a willingness to laugh at themselves, and a deep commitment to providing person-centered, dignified care to those in need.
