My name is Peter, yet the patient called me “Jack”

Published on June 23, 2023

Updated on December 25, 2023

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 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.

In that exceedingly grim time, I was doing my best to win Norma's trust as her nurse, which was made more difficult due to the mask requirement. Seeing a smiling face of a person with soft inquisitive eyes and a soft voice where you can see their mouth and lips reinforcing you are there to provide loving care is difficult at best when the person with whom you are trying to connect is already afraid of what has been happening to them.

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 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 (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 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.

Resources

My Loved One with Dementia

Understanding Dementia (Alzheimer's & Vascular & Frontotemporal & Lewy Body Dementia) (Video)

How Do I Know Which Dementia I'm Looking At? (Video)

Dementia Training material (Free)

Promoting Meaningful Relationships with Dementia Patients through Validation Therapy

Unlocking the Power of Validation Therapy in Compassionate End-of-Life Care

Validation Therapy: A Valuable Tool for Families and Healthcare Teams

Best Practices for Approaching Combative Dementia Patients

The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer's Disease and Other Dementias

As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.

How Do I Know You? Dementia at the End of Life

The Dementia Caregiver: A Guide to Caring for Someone with Alzheimer's Disease and Other Neurocognitive Disorders (Guides to Caregiving)

Sundown Dementia, Vascular Dementia and Lewy Body Dementia Explained

The Caregiver's Guide to Dementia: Practical Advice for Caring for Yourself and Your Loved One (Caregiver's Guides)

Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers

The Dementia Caregiver's Survival Guide: An 11-Step Plan to Understand the Disease and How To Cope with Financial Challenges, Patient Aggression, and Depression Without Guilt, Overwhelm, or Burnout

Dementia Care Companion: The Complete Handbook of Practical Care from Early to Late Stage

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.

Gone from My Sight: The Dying Experience

The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death

By Your Side , A Guide for Caring for the Dying at Home

As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.

The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias

Dementia Home Care: How to Prepare Before, During, and After

The Dementia Caregiver's Survival Guide: An 11-Step Plan to Understand the Disease and How To Cope with Financial Challenges, Patient Aggression, and Depression Without Guilt, Overwhelm, or Burnout

Dementia Caregiving: A Self Help Book for Dementia Caregivers Offering Practical Coping Strategies and Support to Overcome Burnout, Increase Awareness, and Build Mental & Emotional Resilience

Navigating the Dementia Journey: A Compassionate Guide to Understanding, Supporting, and Living With Dementia

Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers

Four Common Mistakes by Caregivers of loved ones with Dementia and what do differently (video)

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.

My Aging Parent Needs Help!: 7 Step Guide to Caregiving with No Regrets, More Compassion, and Going from Overwhelmed to Organized [Includes Tips for Caregiver Burnout]

Take Back Your Life: A Caregiver's Guide to Finding Freedom in the Midst of Overwhelm

The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

Dear Caregiver, It's Your Life Too: 71 Self-Care Tips To Manage Stress, Avoid Burnout And Find Joy Again While Caring For A Loved One

Everything Happens for a Reason: And Other Lies I've Loved

The Art of Dying

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

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