At 40, Mariam Jumaat has confronted death more times than most do in a lifetime.
A home nurse for end-of-life patients, she has walked the final mile alongside more than 100 patients with incurable conditions such as end-stage dementia, stroke, heart disease and cancer. She visits them at home, eases their symptoms, and stands beside them at death’s door.
It’s an intense and sombre job. Yet, when asked what dying looks like, her first memory of it isn’t one of despair.
Mariam fondly recalls a “whiskey uncle” who had terminal cancer. He was her first patient in this role and also the first she lost.
She remembers that first home visit to his three-room flat where three to four generations of his family had gathered – babies, teenagers, adults and seniors. Everyone was praying. What struck Mariam in that moment was the love and warmth within the family.
The patient could not eat, had little urine output, was breathless and in pain – clinical signs that the end was near. “When my mentor told them that the clinical signs were not looking good, the whole family cried, even the big and strong men with tattoos,” she recalled.
The family asked Mariam what more they could do. Mariam knew that there was not much more, so she asked about the patient’s favourite food. He liked whiskey. “Give it to him,” she said.
“The most peaceful deaths I have seen usually involve happy people with loved ones around them,” said Mariam. (Photo: Home Nursing Foundation)
“They dabbed it on his tongue, and they shared a drink together as a family. Shortly after, he became unconscious and passed on without any morphine,” Mariam told CNA Women.
His family later told her it was a “happy death”.
Mariam’s role is a relatively new one. It is part of Home Nursing Foundation’s (HNF) Integrated Home Health programme launched in October 2023 to enable patients with life-limiting illnesses to spend their final months at home with the support of a team of nurses, doctors and medical social workers.
When Mariam was first offered the job in 2022, she flatly declined.
Then, most of her patients had falls or accidents. As an HNF nurse, her job was to change wound dressings, catheters and feeding tubes during home visits. Most patients got better.
“I didn’t want to work with dying patients,” she said. “As a nurse, I always wanted my patients to get better. If they didn’t get better, I didn’t think I’d done a good job.”
It took a year for Mariam to change her mind. Over this period, she watched a small percentage of her patients who could not get better transfer to hospices, unable to spend their last days at home with their loved ones. This saddened her.
Mariam’s role is to support patients who want to spend their final months in the comfort of their own homes, surrounded by the people and things they love. (Photo: Home Nursing Foundation)
Many patients do not want to die in hospital, Mariam reflected. Hospitals also limit the number of visitors at any one time, and it can be harder for young children to visit, she added.
“As a nurse, I feel that home is the best place to pass on – the familiar smells, their own bed, and loved ones around them,” she said.
In 2023, Mariam accepted the role. Her very first encounter with the “whiskey uncle” gave her a new perspective – death can be peaceful, calm and meaningful.
Today, nearly 400 patients are enrolled in the programme, which is for those with a life expectancy estimated at six months to a year, though some patients live beyond this.
Each day, Mariam travels to four to five different homes. During each visit, she does a top-to-toe general check and monitors vital signs such as blood pressure, oxygen levels, temperature and blood sugar levels.
Most patients require monthly visits. But those with symptoms such as vomiting, breathlessness and pain might benefit from weekly or more frequent visits.
One of the most common issues is constipation. “It is like a clog. If [stool] doesn’t come out, the patient will vomit,” Mariam explained. In such cases, she might administer suppositories and laxatives.
Mariam said that in the final critical moments, some families may not be able to let go.
“Even when the patient is within hours or minutes of death, instead of managing the symptoms or gathering family members, they might be frantically calling private doctors to try to save the patient,” she said.
“When I first joined nursing, I thought it was about changing diapers and administering intravenous drips. Now, my goal is to make (end-of-life) patients comfortable and pain-free in their homes,” says Mariam. (Photo: Home Nursing Foundation)
Mariam has also witnessed painful partings. She recalls arriving at an elderly patient’s house minutes after she died.
“I checked her blood pressure and oxygen (level). There were no readings at all. As a nurse, I cannot certify death so I suggested that the son call the doctor,” she recalled.
“Just then, the patient’s daughter arrived with soup for her mother and greeted me chirpily. When she realised her mother was not breathing, she burst into tears.
“She kept insisting her mother was sleeping and called to her for a good five minutes. Her brother started crying too. They knelt in front of their mother, cupped her face and began shouting for her,” Mariam shared.
Even when Mariam is not at the death scene, the family sometimes video-calls her, crying inconsolably, to check if the patient has died.
Recalling one such video call, she said: “I couldn’t see properly from the video call. But I knew there was no blood pressure, and I could see from the patient’s face that he had passed on. I didn’t know if the family was in denial or they really didn’t know he was dead. It was heartbreaking.”
The most peaceful deaths are those in which the patient and family have made peace, said Mariam.
Mariam visits four to five homes each day, from affluent homes to one-room rental flats. (Photo: Home Nursing Foundation)
She fondly recalled a “Peranakan Ah Ma” who showed her a beautiful yellow and green kebaya she wanted to wear for her funeral. She had planned the beaded shoes, earrings, necklace, bracelet and rings she wanted to wear, and on which fingers.
“Everything moved me, from the decisions she made about her clothes to how she wanted to spend her final days. She said, ‘I’m not scared to die. My husband is waiting for me. I want to be cantik (beautiful in Malay) for him,’” Mariam recalled.
The nurse added that her deepest lessons come from personal loss. The youngest of five children, Mariam’s mother died of breast cancer when she was 10.
“At that age, I only knew about fever and stomach pain. I didn’t know what cancer was. When I was feeding her, I didn’t know that she could not eat. I thought we were just playing. When I was brushing her hair and it fell off, I thought we were playing doll.
“When she passed away, everybody told me she’s not coming back, but I still didn’t understand. I thought, she was here, she was sleeping,” Mariam said.
But the next day, when the loss finally sank in, Mariam came down with a fever that lasted for two weeks.
Mariam said journeying with her eldest sister through her final days inspired her to care for end-of-life patients with more empathy. (Photo: Home Nursing Foundation)
Many years later, in her 20s, Mariam endured the pain for a second time when her beloved eldest sister was diagnosed with breast cancer.
“She was 10 years older than me, and after my mother died, she quit her studies to take care of me and my siblings, and work. She was my idol,” said Mariam, tears welling in her eyes.
“When she was ill, I took care of her, bathed her, gave her medication and did her wound dressing. As the tumour grows, when you remove the dressing, blood will shoot out,” she added.
After a two-year battle, the cancer spread to her sister’s brain, and she died, said Mariam, tears now streaming down her face.
For a moment, Mariam could not speak. “That was why I initially rejected being in this team. I was scared I’d be emotional thinking of this,” she said.
“It is also why I want to care for end-of-life patients now,” she added, after another pause.
“Life is very fragile and unpredictable,” she said. Perhaps, the best way to avoid regrets is to live to the fullest and appreciate the little moments, she reflected.
“We're going to die one day, right? Instead of avoiding it, we should just embrace it like the whiskey uncle and kebaya aunty.”
CNA Women is a section on CNA Lifestyle that seeks to inform, empower and inspire the modern woman. If you have women-related news, issues and ideas to share with us, email CNAWomen [at] mediacorp.com.sg.
Continue reading...
A home nurse for end-of-life patients, she has walked the final mile alongside more than 100 patients with incurable conditions such as end-stage dementia, stroke, heart disease and cancer. She visits them at home, eases their symptoms, and stands beside them at death’s door.
It’s an intense and sombre job. Yet, when asked what dying looks like, her first memory of it isn’t one of despair.
Mariam fondly recalls a “whiskey uncle” who had terminal cancer. He was her first patient in this role and also the first she lost.
She remembers that first home visit to his three-room flat where three to four generations of his family had gathered – babies, teenagers, adults and seniors. Everyone was praying. What struck Mariam in that moment was the love and warmth within the family.
The patient could not eat, had little urine output, was breathless and in pain – clinical signs that the end was near. “When my mentor told them that the clinical signs were not looking good, the whole family cried, even the big and strong men with tattoos,” she recalled.
The family asked Mariam what more they could do. Mariam knew that there was not much more, so she asked about the patient’s favourite food. He liked whiskey. “Give it to him,” she said.
“The most peaceful deaths I have seen usually involve happy people with loved ones around them,” said Mariam. (Photo: Home Nursing Foundation)
“They dabbed it on his tongue, and they shared a drink together as a family. Shortly after, he became unconscious and passed on without any morphine,” Mariam told CNA Women.
His family later told her it was a “happy death”.
“I DIDN’T WANT TO WORK WITH DYING PATIENTS”
Mariam’s role is a relatively new one. It is part of Home Nursing Foundation’s (HNF) Integrated Home Health programme launched in October 2023 to enable patients with life-limiting illnesses to spend their final months at home with the support of a team of nurses, doctors and medical social workers.
When Mariam was first offered the job in 2022, she flatly declined.
Then, most of her patients had falls or accidents. As an HNF nurse, her job was to change wound dressings, catheters and feeding tubes during home visits. Most patients got better.
“I didn’t want to work with dying patients,” she said. “As a nurse, I always wanted my patients to get better. If they didn’t get better, I didn’t think I’d done a good job.”
It took a year for Mariam to change her mind. Over this period, she watched a small percentage of her patients who could not get better transfer to hospices, unable to spend their last days at home with their loved ones. This saddened her.
Mariam’s role is to support patients who want to spend their final months in the comfort of their own homes, surrounded by the people and things they love. (Photo: Home Nursing Foundation)
Many patients do not want to die in hospital, Mariam reflected. Hospitals also limit the number of visitors at any one time, and it can be harder for young children to visit, she added.
“As a nurse, I feel that home is the best place to pass on – the familiar smells, their own bed, and loved ones around them,” she said.
In 2023, Mariam accepted the role. Her very first encounter with the “whiskey uncle” gave her a new perspective – death can be peaceful, calm and meaningful.
Today, nearly 400 patients are enrolled in the programme, which is for those with a life expectancy estimated at six months to a year, though some patients live beyond this.
Each day, Mariam travels to four to five different homes. During each visit, she does a top-to-toe general check and monitors vital signs such as blood pressure, oxygen levels, temperature and blood sugar levels.
Most patients require monthly visits. But those with symptoms such as vomiting, breathlessness and pain might benefit from weekly or more frequent visits.
One of the most common issues is constipation. “It is like a clog. If [stool] doesn’t come out, the patient will vomit,” Mariam explained. In such cases, she might administer suppositories and laxatives.
WHEN FAMILIES STRUGGLE TO LET GO
Mariam said that in the final critical moments, some families may not be able to let go.
“Even when the patient is within hours or minutes of death, instead of managing the symptoms or gathering family members, they might be frantically calling private doctors to try to save the patient,” she said.
“When I first joined nursing, I thought it was about changing diapers and administering intravenous drips. Now, my goal is to make (end-of-life) patients comfortable and pain-free in their homes,” says Mariam. (Photo: Home Nursing Foundation)
Mariam has also witnessed painful partings. She recalls arriving at an elderly patient’s house minutes after she died.
“I checked her blood pressure and oxygen (level). There were no readings at all. As a nurse, I cannot certify death so I suggested that the son call the doctor,” she recalled.
“Just then, the patient’s daughter arrived with soup for her mother and greeted me chirpily. When she realised her mother was not breathing, she burst into tears.
“She kept insisting her mother was sleeping and called to her for a good five minutes. Her brother started crying too. They knelt in front of their mother, cupped her face and began shouting for her,” Mariam shared.
Even when Mariam is not at the death scene, the family sometimes video-calls her, crying inconsolably, to check if the patient has died.
Recalling one such video call, she said: “I couldn’t see properly from the video call. But I knew there was no blood pressure, and I could see from the patient’s face that he had passed on. I didn’t know if the family was in denial or they really didn’t know he was dead. It was heartbreaking.”
WHAT DEATH HAS TAUGHT HER
The most peaceful deaths are those in which the patient and family have made peace, said Mariam.
Mariam visits four to five homes each day, from affluent homes to one-room rental flats. (Photo: Home Nursing Foundation)
She fondly recalled a “Peranakan Ah Ma” who showed her a beautiful yellow and green kebaya she wanted to wear for her funeral. She had planned the beaded shoes, earrings, necklace, bracelet and rings she wanted to wear, and on which fingers.
“Everything moved me, from the decisions she made about her clothes to how she wanted to spend her final days. She said, ‘I’m not scared to die. My husband is waiting for me. I want to be cantik (beautiful in Malay) for him,’” Mariam recalled.
The nurse added that her deepest lessons come from personal loss. The youngest of five children, Mariam’s mother died of breast cancer when she was 10.
“At that age, I only knew about fever and stomach pain. I didn’t know what cancer was. When I was feeding her, I didn’t know that she could not eat. I thought we were just playing. When I was brushing her hair and it fell off, I thought we were playing doll.
“When she passed away, everybody told me she’s not coming back, but I still didn’t understand. I thought, she was here, she was sleeping,” Mariam said.
But the next day, when the loss finally sank in, Mariam came down with a fever that lasted for two weeks.
Mariam said journeying with her eldest sister through her final days inspired her to care for end-of-life patients with more empathy. (Photo: Home Nursing Foundation)
Many years later, in her 20s, Mariam endured the pain for a second time when her beloved eldest sister was diagnosed with breast cancer.
“She was 10 years older than me, and after my mother died, she quit her studies to take care of me and my siblings, and work. She was my idol,” said Mariam, tears welling in her eyes.
“When she was ill, I took care of her, bathed her, gave her medication and did her wound dressing. As the tumour grows, when you remove the dressing, blood will shoot out,” she added.
After a two-year battle, the cancer spread to her sister’s brain, and she died, said Mariam, tears now streaming down her face.
For a moment, Mariam could not speak. “That was why I initially rejected being in this team. I was scared I’d be emotional thinking of this,” she said.
“It is also why I want to care for end-of-life patients now,” she added, after another pause.
“Life is very fragile and unpredictable,” she said. Perhaps, the best way to avoid regrets is to live to the fullest and appreciate the little moments, she reflected.
“We're going to die one day, right? Instead of avoiding it, we should just embrace it like the whiskey uncle and kebaya aunty.”
CNA Women is a section on CNA Lifestyle that seeks to inform, empower and inspire the modern woman. If you have women-related news, issues and ideas to share with us, email CNAWomen [at] mediacorp.com.sg.
Continue reading...