Beginning
“Ring! Ring! Ring!”
I open my eyes. It’s still dark outside the window. Rubbing my eyes I hear a distant thought,
“Come on Fukiko, time to get up!”
Its 5.30am on the alarm clock and the rest of me reluctantly agrees..
“Oh yes Ok..”
I get up to feed myself and my dog Rocky. That’s been my morning routine for two years.
I grew up in Japan, and never learned to speak English well there. I’ve been away from Japan for over two decades, in a long immersion course in Aussie culture. Australia is the ‘lucky country ‘ for me. Now, although spoken English can still be tricky, I can speak well enough to work as a nurse here in Sydney.
Hospitalisation is a major detour for many people in their life journey. Major Illness, hospital admission, the ward bed, tests, diagnoses, treatments, an assortment of nurses, doctors, physiotherapists.. tubes monitors, medications. And finally, discharge back to home base.
Some of those discharged still need nursing care at home. That’s my work now. I visit these patients, assess their condition, give intravenous antibiotics ( IVABs), do cannulations, take blood samples, and dress wounds . Mostly they recover well, but some need rehospitalisation. Many patients are elderly with chronic illnesses. They are so happy to get back home, even those who live alone. When I see them they mostly love to talk. They have plenty of stories.
Today my stories are just beginning. Muesli and yoghurt are finished. I wash my face, check my uniform , check ID , check patients’ addresses.
“It’s 6.15 am. Fukiko. Time to go to work! Which Australian Story will it be today?”
Barbara
I am apprehensive when I read Barbara’s details…
-lives at home with son. Requires 24 hr IVAB infusion via a PICC line, daily cellulitis wound care…
Because I remember two hard days in my busy ward from 3 years before.” Barbara?.”
….multiple medical conditions- cardiovascular, respiratory, renal- diabetes, lethargy, nausea, dyspnea, pain from persistent cellulitis, obesity, weight =190 kg….” Barbara?..Oh. That Barbara! Oh no!”
I remember the hoists and the bulky bariatric equipment needed to mobilise her. I felt sorry for Barbara in a mixed 4 bed room when what she really needed was the space and privacy of a single room. At first Barbara was cooperative and patient. She chatted about her previous job as a teacher, her family and her dogs while waiting. Her nursing care was often delayed until three staff became available. Progressively she became more frustrated with waiting and pressing the call button. Eventually she had faecal incontinence on the bed. I never heard her press the call button. Barbara was adamant that she did press it.
“Barbara, I’m sorry that I could not help you quickly” I apologised.
“I don’t understand what you are saying. Do you speak English? The reason you can’t get help quickly is your English. Other nurses can’t understand you. You should go to English school!” was her angry reply.
Of course I felt miserable and tears flowed.. I worry that I am not a native English speaker and I always try to speak English clearly and slowly and check that patients understand me. I felt like someone had punched me in the stomach. I was angry and resentful. On the other hand, I know from experience that patients are often not their normal self in hospital. Why couldn’t I be more generous and forgiving to Barbara? I talked to my nursing unit manager and colleagues. They gave me reassurance and comfort.
“Don’t worry. It’s not your problem.”
Soon after that Barbara was transferred out to a private hospital and I would not see her again. Until today. Now I am anxiously standing at her front door.
I pray ,” Please be nice. Please don’t be horrible to me.”
The door opens to her home
“Hello Barbara, How are you feeling?”
Although still unwell, she walks a little and she is smiling and calm. I am surprised; after three years she still remembers me. Eventually she says,
“I’m sorry that I was so nasty in the ward. I was under stress and couldn’t control myself”
A huge load comes off my mind with those words. I am so relieved. And while I am doing treatment for her, Barbara talks about her dogs, and children.
Nursing has its daily challenges, but I always need to remember that patients, especially in hospital, are ill and vulnerable and often unkind words and actions arise from their distress. Whatever they may say to me, I need to focus on providing the best care for them.
Frank
-94 years old, lived alone, rural NSW, recently moved to daughter’s house in city due to septic right toe caused by injury. Requires 24 hr IVAB and daily toe dressing-
Whenever I attend the care for elderly Australians who lived through World War 2 there is some lingering guilt because of the inhuman actions of the Japanese army who caused so much suffering for soldiers and their families. When I grew up in Japan, we were taught little of this. We only learned that Japanese were victims of the war and of the atomic bomb. Many young Australians say,
“Fukiko , you did nothing wrong. Don’t feel ashamed because of your nationality. The war finished a long time ago”
However these simple words don’t seem to be an answer for me.
I knock at the door. Frank’s daughter, Maria, answers and I introduce myself and enter. Frank is sitting on the Lazyboy chair, frail and thin.
“Hello Mr Smith…”
Frank nods, “………”
When I tell him my name, Frank looks a little surprised and then he looks far away into the distance. When I talk about his treatment Frank answers only “Yes” or “No”. Maria talks to me about Frank.
“He’s a veteran of Kokoda. After the war he worked as an engineer. Then he lost his wife from cancer 20 years ago. He managed OK by himself and still drives a car. However since last year he’s had insomnia and panic attacks. He has nightmares where he appears to be fighting at Kokoda. Also he is becoming very reticent.”
Maria says she has been worried about Frank because he never expresses much emotion even though there is something that is worrying him a lot. He also refuses to go and see the GP about it.
As for me , I am feeling guilty that whatever the Japanese army did at Kokoda, it can make this old ,frail man suffer all over again seventy years later. I wasn’t sure what to say but with my heart beating fast and tears in my eyes I said slowly,
“Frank. I am a Japanese. I feel very sad that you still suffer from your experiences in the war. I’m sorry.”
Frank looked at me, then he burst into tears. “Thankyou for saying sorry to me. But don’t apologise. You didn’t do anything wrong. I just cannot control my mind sometimes.”
Maria started sobbing. “Thankyou for coming to my home. Thankyou for saying sorry. My Dad still carries terrible memories of the war”
I asked Maria to arrange a home visit by the GP to investigate Frank’s psychological condition.
Most of us cannot begin to imagine the trauma of war. The suffering lasts a long time. I was so happy that I visited them. The scars of war are not easy to heal, but I hope I made a small difference.
Malcolm
“Hello Malcolm”, I put on gloves and a long sleeved gown after entering his home.. It’s a routine followed so many times since last August. Malcolm has VRE, a kind of bacteria which resists most antibiotics. The barrier-nursing routine is to protect other patients. Home visits by nurses have lasted for 7 months. This is the last visit, although Malcolm is still not completely well. It’s near the end of a very long detour for Malcolm in his life journey.
Malcolm and his wife entered Australia on his student visa .Soon after arrival he is diagnosed with acute leukemia in Darwin and is then transferred to a Sydney hospital. Malcolm acquires the VRE bacteria in the same hospital and becomes critically ill. Months of treatment in the ICU follow. Then he suffers spinal osteomyelitis which requires long term 24 hour IVAB following discharge. Which is why I’ve been visiting him.
The situation last August was mostly black with some silver lining. Although Malcolm has no permanent residence visa, his medical fees are luckily covered by his overseas medical insurance. However his wife has no money and is officially not permitted to stay in Australia because of his student visa situation. If Malcolm returns to his country, there is no oral chemotherapy medication to treat his ongoing leukemia. He will die. Fortunately the couple have been allowed to stay in the unit owned by the Leukemia Foundation. Also they have been able to receive some social welfare and the student visa has been extended. These lifesaving arrangements are due largely to the intervention of the medical and allied health team.
Malcolm suffers from persistent severe backpain and requires daily opioid analgesics plus ongoing oral chemo drugs to slow the progress of the leukemia. The solution for the leukemia is a stem cell transplant. Without Medicare the prospects for a transplant are uncertain, because it is so expensive, and he needs to find some charitable funding.
So Malcolm was in limbo in August. He was stuck in the Leukemia Foundation unit, he couldn’t study, he had no money, he couldn’t go back to his country, his wife needed to care for him and the leukemia was a lingering death sentence unless there’d be a transplant. I visited Malcolm many times. He was always positive and calm, smiling. He talked about his own country, growing up there and family. I never detected any sign of self- pity or resentment..
The situation improved in November. I remember one visit. Malcolm was so happy..
“Fukiko, I will have a stem cell transplant next January! My brother will be my donor!”
Around Christmas, his parents and brother came to Sydney and the transplant was a success.
So this is the last home visit, today.
“Fukiko, thankyou very much for looking after me. Australia is a good country. I have has so many supports from so many people since I got sick. I want to be useful for Australia when I get better .. because this country saved my life”.
Malcolm is smiling, but there are also tears of gratitude.
“Please take care, Malcolm”. I leave his unit.
I have read somewhere that the long term survival rate for stem cell transplants is high, about 85% or more, but I am not a haematology expert. I wonder what will happen to Malcolm. Normally we only see patients when they are unwell, not afterwards. I hope to meet Malcolm again perhaps by chance, walking in the street. He will be well. He will be enjoying study and part time work. This news will be wonderful for the other nursing and allied health staff at my office. I am only one of many who worked together as a team to care for Malcolm during his long illness. We have the best wishes for him and his wife and hope they are blessed with a long and useful life.
Ending
It is two o’clock in the afternoon. I’m back in the car after the fifth home visit, the last for today. There’s still the documentation to finish (Sigh!). I’m a bit tired from driving because the patients were kilometres apart scattered across a wide arc of the city. I think about those patients. They are not completely healthy. But they are coping with their illnesses at home. I am so glad I could see them at home, where they have identity and familiarity. I can see how their condition improves day by day, week by week. .Also I am satisfied with my nursing care. I’ve given something of myself to them. And I’ve learned something from them, about their families, their beliefs, their worries, their hopes, and their Australian stories.
I turn the car key.
Back to the office… and the report.
Note: In the following stories the patients’ names have been changed, but the stories are about real people and events.
