Wednesday, May 30, 2012
“Oh my God!” The charge nurse shook her head, and sighed. I heard her, as I stood by her desk, looking for a medical chart.
“What’s wrong?” I asked.
“The new admit...” Her face had an unusual, worrisome expression. “Have you met him?”
“No, not yet. I’m actually looking for his chart.”
“Please, go and see him.” She looked distraught. “I’ve never had a patient that looked like that. It’s just so sad.”
“What?” I frowned, with no clue of what was upsetting her so much. I thought I should better go and meet Mr. Johnson, the new resident who had just been admitted.
I knocked at the door. “Come on in,” I heard a deep voice reply from inside the room. I opened the door and walked in. Mr. Johnson was sitting on the recliner.
I understood immediately why the nurse was disturbed. Mr. Johnson’s appearance was shocking. Nothing like I had seen in a nursing home before.
Mr. Johnson had suffered a long fight with cancer, and it had won, now metastasized, with his face showing the battle scars. He had just undergone a surgery that required part of his skull and face being removed. Some kind of skin implant was done to cover the enormous wound.
I was prepared to see something heartbreaking, but not to this extent. His appearance was something only Hollywood would produce, a picture from a scary movie. It was certainly disturbing.
Fortunately, I remained calm, and treated him like any other of my residents. I welcomed him, and offered to accommodate for him anything that was feasible to meet his needs.
He was polite, yet his words carried a hint of authority.
He wasn’t looking for sympathy.
At that moment, I started looking at Mr. Johnson from a different perspective, his appearance being no longer a distraction. I saw a proud man in his late eighties, not ready to give up with his long battle against cancer.
In the following days, the staff complained that Mr. Johnson was “demanding,” and that he would not comply with some of the “standard” care protocols.
“He doesn’t listen, he just does what he wants to do,” an aide said.
“He wants to go home but the hospital told him he had to go to a rehab facility,” a therapist commented.
“Mr. Johnson is really upset,” a nurse voiced to me. “He went to the dining room for breakfast and he got mad at people staring at him.”
My lips drew taut. I knew my resident was facing not just the battle against his illness, but also the shun of others who failed to realize that the scars he visibly bore in his losing fight against the cancer hurt his pride.
I visited Mr. Johnson in his room that afternoon. He laid in his bed. He asked me to sit at his bedside. I did, and we began a light, trivial conversation. Then he seemed comfortable enough to start telling me about his personal life.
He spent a great deal of time talking about his career in the military. The conversation turned into a fascinating and meaningful discourse. The spirit of a courageous officer emerged there in front of me as he continued his narration of his 26 years in the military. A brave American soldier shone through his anecdotes of his WWll mission as a gunner in a military aircraft.
I no longer looked at a patient with a deformed facial appearance, with protuberant freshly and bloody scars. What was in front of me was a hero. A hero from WWII and a hero here and present, struggling to be released from yet another battle, for freedom.
Mr. Johnson talked about his illness, and how he had gone against the odds to survive, even though his battle had left him with quite an unpleasant appearance.
“I’m fully aware of how I look, and won’t be intimidated because of that. That’s why I went to the dining room this morning, but it was overwhelming to see all those people staring at me, like if I looked creepy.” Mr. Johnson spoke in a broken voice and his eyes welled in tears.
I held his hand, and said nothing. I felt a knot in my throat.
“You see? I want to be where I belong... home.” Mr. Johnson said with soft words. “I want to go home.”
“Mr. Johnson, you’re a fighter, and an inspiration to anyone who will know you.”
A week later, I went to Mr. Johnson’s room to say good-bye. He was being discharged to his home that day. Home health services and other medical arrangements were made.
“You’re an angel. Thank you,” Mr. Johnson said, and drew close to me, kissing me on my cheek.
I hugged him, fighting away tears.
I heard that Mr. Johnson died two weeks after his discharge. His body had given up, but his spirit remained, especially among those he touched with his wisdom and courage.
"Even against the greatest of odds, there is something in the human spirit - a magic blend of skill, faith, and valor - that can lift men from certain defeat to incredible victory." - Walter Lord (1917 - 2002)
Sunday, May 20, 2012
I heard music as I entered the nursing home. I thought the sound was familiar, and soon recognized it came from the piano in the dining room.
Who would be playing the piano at 7:00 in the morning? I pondered.
Curious, I headed to the dining room and peered through a glass window. I spied a few residents, some drinking coffee, others drinking juice. I continued scanning the large room until my eyes met the person playing the piano. It was a resident.
Seeing Dan playing the piano was a tremendous surprise to me, as I never knew he played the piano. I wished I had more time to get to know Dan better. After a week of being in the nursing home, he had been irritable, expressing he wanted to leave.
His physician indicated Dan was no longer able to take care of himself. At this point, Dan had already given up his apartment. But he now regretted it.
Dan’s oldest sister, Laura, was the only family around. She adored her “little brother” and always lived nearby, since the passing of their mother. In her seventies and with health problems of her own, she tried to convince Dan to stay in the nursing home. Unsuccessful in her persuasion, Laura’s heart softened to the point she decided to take Dan home with her.
Dan never married and had no children. He had no social life. He was a private person his entire life. Although it wasn’t in his medical records, it appeared to me he had some deficit in his cognitive ability, more like what in the mental health field is known as Borderline Intellectual Functioning. He was deemed disabled at a young age and attended special education. He lived with his mother most of his life, and after she died, Dan moved to a small apartment and managed to live independently for several years.
Dan continued playing the piano for a while. The other residents remained quiet, as though indulging in the music—some kind of classical piece, a soft and melancholy melody.
I headed to my office, thinking of my resident, trying to understand what he had gone through recently. Dan’s health had deteriorated. He had macular degeneration and his vision was poor. He wasn’t taking his medications properly at home because he couldn’t differentiate the pills. Dan was weak and had sustained some falls at home.
I could see why he was angry and frustrated. He had lost his home, and his independence. And he wasn’t adjusting well to a closely monitored routine in a nursing home, around many people all of them strangers to him, not the most inviting scenario for a loner like Dan.
After breakfast, I observed Dan coming up in the hall, rolling his wheelchair. I assumed he was heading to his room, to wait for his sister since she would be in soon to pick him up. As he was to pass me, he slowed, drawing close to me. His face reflected sadness.
“Hi Dan!” I greeted and smiled at him.
Dan’s lips stretched into a half smile. “I want to tell you... this has nothing to do with you guys. You all have been nice.” He spoke with soft tone of voice, fishing for words. “I’m not... I’m just not ready to be in a nursing home.”
“Dan, I know that and I totally understand. We love you, and want you to be happy.” Dan unexpectedly opened his arms, and I reciprocated by embracing him.
“Dan, your sister is here!” A nurse exclaimed.
Dan flashed a wide smile, and rushed to meet her.
I finished setting up home health services for Dan. I thought of him the rest of that day. He left me with a winged heart and a treasured memory.
Sometimes, as I walked by the dining room early in the mornings, Dan’s delightful music replayed in my mind.
Dan’s sentimental goodbye melody, I mused.
Monday, May 14, 2012
The food was scrumptious. That’s all I could think as I finished my meal. I glanced around, observed the few other customers eating in the cafeteria, which was a satellite off the main dining hall of the hospital. Everyone seemed to be pleased with his or her orders. I observed a woman in her fifties sitting at a table near by, talking to another woman who appeared to be her friend, about a trip she had taken to town. I didn’t stop to think why I was in that hospital other than to devour the famous fast food culinary staff was known to prepare.
The afternoon seemed pleasant until a customer, a man in his late forties, suddenly stood up and became agitated, yelling out loud. Then he produced a silver, shiny gun, holding it in his right hand, pointing at the ceiling, while cussing and restlessly moving in circles. Everyone seemed paralyzed in terror. No one said a word. My heart pounded as I feared for my life. After a brief moment, the man turned to face a window, and looked outside. A quick thought flashed in my mind.
I exited the cafeteria quickly and ran with all the strength my legs would allow me. I found the stairs and I headed down, running, holding the handrail. I was uncertain whether the man had seen me fleeing the cafeteria or not, or if he was following me. All I had in my mind was I needed to find a safe place. There was no one in the stairwell, going up, or down. I continued running downstairs, not knowing how much longer I would have to run before I would be out of danger. I realized I must have been on the very top floor of the hospital, even though the cafeteria was on the main floor. It must have been a 12-story building, I thought.
The stairs, the walls and the entire building were white. Finally, I arrived to a floor where I noticed a huge change in colors and decoration. I slowed down and scanned around. The walls on this level reflected burgundy and green hues. Plants and beautiful decorative accents were strategically staged all around the medical floor. A foaming spring adorned the center of the place, with water gently running from it and down a stream casting effervescent bubbles bursting and vanishing into the air. I heard soothing music. It resembled a spa.
There were many people around. Some old, some young and many small children. I wondered what medical unit this could possibly be. Then it was as though the answer came to my mind, in a natural way:
I am on the oncology floor.
I continued taking in the floor and the people. Everyone seemed calm and relaxed. I noticed that not all of them were cancer patients; there were visitors as well, but everyone seemed to blend in. Just like a large, happy family.
I saw comfortable leather sofas and chairs placed around the floor. I started to feel tired, and barely reached an empty chair before I collapsed into it. I sat comfortably, feeling serene and safe. I knew I was away from the danger now. I took a deep breath and felt thankful for being in this place.
I observed more children and women, they were chatting and carrying some wardrobe. I looked in front of me, and noticed a large curtain, and realized that behind it was a small stage. They were preparing for an artistic presentation.
I felt at peace. But then I knew it was time for me to go. I stood up and headed toward the exit door. I pushed it open and walked out of the building. I found myself walking down the street, realizing that I didn’t have my purse, my cell phone, or money with me. I walked the empty street, only cars passed by. I recognized the town—it was my hometown.
Then the image of my mother came to my mind.
I looked toward the oncoming traffic, waiting for a taxi to come by. That was the goodness of my hometown, there were hundreds of cabs transiting the avenues of the large city, 24 hours a day. It wouldn’t take that long to board a cab and head to my mother’s place. I was sure she would be happy to see me, even if I had to borrow money from her to pay for the cab.
How silly! I grinned.
Then I blinked, and opened my eyes, but unexpectedly, found myself staring at the ceiling in my bedroom.
It was merely a dream!
I sighed as I recalled the vivid images of my dream.
Tomorrow is Mother’s Day, I realized. Happy Mother’s Day in Heaven, Mom.
Saturday, May 5, 2012
Since today is Cinco de Mayo, instead of "Thank you," I will say, "Gracias" to everyone who followed my posts during the A to Z April challenge. "Gracias," for your thoughtful comments and your encouragement; and "Gracias," for your friendship and kindness.
The 26 vignettes have been removed, and after some editing, they will be compiled into my book in progress entitled Hold My Hand.
The book is about Mrs. MacMillan, an elderly resident of a nursing home who suffers from Alzheimer's dementia. The reader will follow her good and bad days, her confused and lucid moments, and the underlying love story that spices the series.
Although the character and the story are both fictional, the vignettes are based on events I observed in patients with dementia. The story centers on Mrs. MacMillan and what she possibly thinks and feels.
"Gracias" to Nancy Pearce, author of Inside Alzheimer's: How to Hear and Honor Connections with a Person who has Dementia who inspired and encouraged me to continue with this project. These were her insightful words:
Thank you so much for your expressions which touch my heart deeply. I am excited to hear your approach to writing about dementia from a more personal perspective...we need more books that help readers get out of their heads/perspectives and encourage the opening of heart-understandings of the person who has dementia. This, of course, is the reason for my own writings in the form of telling stories.
Good luck with your journey!
With many blessings,
Finally, special "gracias" to Arlee Bird, the creator of the A to Z April Challenge, a wonderful blogger friend and mentor.
“Are you a family member?” the ICU nurse asked, glaring at me as I was approaching Room 7 where Peter, my nursing home resident, lay on a bed, hooked to multiple life-prolonging machines. I turned around to face the nurse.
“I’m the social worker from the nursing home where Peter lives.” I drew closer to her, and tapped my chest, whispering. “He has no family; we are his family.”
The nurse frowned. “Does he have any friends, or a DPOA?”
“The only friends he has are in the nursing home. No, he doesn’t have a Durable Power Of Attorney.”
My memories went back to recent days when I last saw Peter wheeling himself in the hall, heading to the dining room, where he normally used to enjoy his meals and conversions with his tablemates.
At age 61, and once homeless, Peter had found a home and a circle of friends in the nursing home. It had been two years since he came to our facility from the hospital.
Although Peter had multiple health challenges, he was doing fairly well, and no one expected that a heart failure would lead him to be on a ventilator. Peter was reluctant to sign a Durable Power of Attorney as he believed he had many years ahead of him before he would have to cross that road. But he at least did have a Living Will.
“He does have a Living Will. Do you need a copy?”
“I will let you talk with the social worker about that,” the nurse seemed busy and stressed. “Let me page her for you.” As she reached for a telephone I headed to Peter’s room.
Peter was unresponsive. I felt almost dizzy trying to identify the multiple tubes attached to his body: the ventilator breathing tube, NG tube, IVs, Foley catheter...and multiple monitoring devices. He had been in the ICU for almost a week, and I knew deep in my heart Peter was not going to get better. Not based on what I was seeing before me.
I met with the ICU social worker and discussed briefly Peter’s history and his end-of-life wishes. I had my office send the hospital a copy of his Living Will and I was assured they would grant it at the medical team’s discretion. In other words, once the attending physician determined that there could be no recovery from his condition and his death was imminent, all life-prolonging measures would be stopped.
As I returned to my office, I went through Peter’s file. I reread his medical records, the different disciplines notes. I went to his room, and felt a void. Then I pulled a copy of his Living Will. He had executed it a year ago. He had clearly signed that he didn’t want to be on a ventilator, or have a feeding tube, or any life-prolonging measures if he was terminally-ill. Then something suddenly struck me.
Peter was an organ donor!
I called the hospital social worker, and made sure she was aware of this.
A couple of days later, I received a phone call from my co-worker Lori:
“I came to see Peter... he’s taken off the vent two hours ago!”
I rushed to the hospital. I met Lori at the hospital lobby, she had tears in her eyes. We ran to the elevator, but by the time we made our way to the ICU, visitors were not allowed as it was past the visiting hours. Lori called the ICU nurse and begged her to let us in. The nurse was kind and allowed us see Peter.
Peter looked more deteriorated by now, but I was pleased to see him free of all the tubing and machinery. He was still unresponsive. He gasped for air. Every breath was a struggle. We knew he wouldn’t make it that night. I held his warm hand. I told him how much we loved him and how wonderful it was to have him in our “nursing home family.” We said our prayers and good-byes...
That night, I got a phone call from a nurse from the nursing home.
“The hospital chaplain called to let us know Peter expired at 21:30.”
My heart sunk. But I was somehow relieved to know Peter was no longer suffering.
The next day, residents and staff talked about Peter’s passing.
“Peter is a hero,” I said in front of a group of my co-workers. “He was an organ donor, and at this moment, as Peter is in heaven, other peoples’ lives are being saved because of his good heart.”
Peter, a once homeless man, became a friend to many in the nursing home, and a hero to others that may have been saved by his decision to be an organ donor.
“That's Peter’s true legacy,” I said, fighting tears back.
I think of Peter today, and find him to be the inspiration which gave me courage to make a decision that’s been lingering in my mind for years.
I am now an organ donor.
“Without the organ donor, there is no story, no hope, no transplant. But when there is an organ donor, life springs from death, sorrow turns to hope and a terrible loss becomes a gift. – Reprinted from the 2009 UNOS Annual Report”