It was around 2:30 pm on a Wednesday in August when Kamanie Silochan realized her mother was dying.
Silochan, a 54-year-old businesswoman from East Auckland, was at her family home in Dannemora, which she shared with her husband, Basanth, a project manager; their two adult children; and her elderly mother, Subhuma Govender. They were such a close-knit family that Silochan, a dedicated All Blacks fan, referred to them as the “tight five.”
At 89, Govender — known as “Dolly” since childhood — had advanced dementia, a condition that causes a decline in thinking, behavior, and the ability to perform daily activities. For six years, she had been bedbound, unable to walk, talk, use the toilet, or feed herself.
The Silochans had kept Govender at home long after most dementia patients needing hospital-level care would have moved to a facility. Silochan cared for Govender around the clock, cleaning and feeding her, administering medications, and moving her regularly to prevent pressure injuries on her fragile skin.
Govender’s bedroom was a testament to Silochan’s dedication. Next to the narrow hospital-style bed where Govender lay was a stack of plastic boxes, meticulously organized with the various medical supplies needed to keep her mother comfortable. Everything in the room, from Govender’s clothes to the bedding, cushions, and curtains, was pink, her favorite color.
For 16 years, Silochan had been part of a silent army of New Zealanders providing over a million hours a week of unpaid care to relatives with dementia, often with limited support and at a high cost to their own wellbeing. Silochan didn’t see this as a hardship: She found joy in caring for her mother and took pride in the fact that by nursing Govender themselves, her family wasn’t adding to the burden on the overstretched health and social care systems.
Lately, however, Silochan feared that the arrangement that had worked so well for so long was falling apart.
Soon after Govender developed a bedsore, the GP who regularly treated her quit for personal reasons. The practice said it didn’t have another physician who could make home visits and offered video consultations instead.
Silochan insisted that home visits were essential, both to oversee the wound and to treat Govender in the future. Govender had a heart condition and was prone to lung infections, and Silochan worried that a doctor might miss something important if they only saw her remotely. But when Silochan searched for another practice, she couldn’t find one willing to do home examinations.
Meanwhile, Govender’s bedsore worsened, burrowing down to the bone. Then she started refusing food.
Then her breathing changed.
This wasn’t the sound Govender usually made when her lungs were developing an infection; this was different, a breathing pattern Silochan hadn’t noticed before, and it alarmed her.
Silochan shouted to her son upstairs. Call your father and sister, she told him. Tell them to get home right away.
She cradled Govender and tried to get her to swallow water.
“Come on, you’re going to be okay,” she recalls telling her mother. “You need to start drinking.”
Silochan had always been extremely close to her mother. “It was just the two of us for most of our lives,” she says.
Govender grew up in Mooi River, a picturesque farming town in South Africa, in a prosperous Hindu family. She was smart and strong-willed, Silochan says — the “sharpest knife in the drawer.” Govender was a schoolteacher until she married Silochan’s father, an engineer at a printing press. He died of a heart attack when Silochan was 4, after which Govender raised Silochan on her own.
When Silochan married Basanth and had children, Govender lived with them. When they migrated to New Zealand in 1996, Govender joined them. She managed their household, cooked every night, and helped raise their kids.
Govender was known for her immense integrity and generosity, Silochan says. She collected donations for Starship Children’s Hospital, cooked meals for a homeless shelter, and encouraged her grandchildren to set aside pocket money to give to the poor at Christmas.
In 2007, when Govender was in her mid-70s, she was diagnosed with dementia. Initially, the symptoms were minor. She repeated herself in conversations and forgot about pots simmering on the stovetop. Gradually, Govender became less independent until, about six years ago, she was so severely disabled that she became bedbound.
Govender was one of an estimated 70,000 New Zealanders with dementia, a number projected to more than double in the coming decades as the population ages. Experts say the country is not prepared to handle this burden.
“This is a grossly and chronically under-resourced sector and it has been that way for a very long time,” says Catherine Hall, chief executive of Alzheimer’s New Zealand. Decades of poor planning and underfunding have created significant gaps at every level, from prevention to diagnosis, early intervention, rest homes, and palliative care.
A 2021 study by researchers at the University of Auckland found that dementia accounts for 9 percent of all deaths and costs the country $6.2 billion annually. However, these figures don’t capture the enormous strain the condition puts on individual families.
For caregivers, dementia can mean years of demands that many find difficult to sustain, on top of the grief of progressively losing a loved one. It can be exhausting and isolating — even for someone as resourceful as Silochan.
As Govender’s condition worsened, Silochan quit her corporate job to spend more time at home with her mother. She started her own business, a fast-food chicken restaurant in a shopping mall, which she managed mostly from Govender’s bedside. She fully embraced the role of caregiver.
Most people with dementia go into care facilities when they need round-the-clock nursing, experts say. It is not known exactly how many families are in the Silochans’ position of providing hospital-level care at home. Dr. Bryan Betty, chairman of General Practice New Zealand, says it is “not uncommon” but not the norm. Hall, at Alzheimer’s NZ, says it is more typical among Māori, Pacific, and Asian families, although she believes it will become more common among all groups as dementia cases rise and aged care facility beds become scarcer.
For families who choose to keep their relatives at home, there is a loose network of medical, social, palliative, and other services in the community to support them, provided by primary practices, Te Whatu Ora, dementia charities, Hospice, and other organizations. However, these services are often in a precarious state, people in the sector say.
Years of underfunding, understaffing, and rising demand have resulted in a patchwork of services that are disjointed, inconsistent, and inequitable. Caregivers can find the system exhausting and confusing to navigate and may not even be aware of the support available to them.
As a result, some families end up isolated, particularly in moments of crisis.
When Silochan married Basanth and had children, Govender lived with them. When they migrated to New Zealand in 1996, Govender joined them. She managed their household, cooked every night, and helped raise their kids.
Govender was known for her immense integrity and generosity, Silochan says. She collected donations for Starship Children’s Hospital, cooked meals for a homeless shelter, and encouraged her grandchildren to set aside pocket money to give to the poor at Christmas.
In 2007, when Govender was in her mid-70s, she was diagnosed with dementia. Initially, the symptoms were minor. She repeated herself in conversations and forgot about pots simmering on the stovetop. Gradually, Govender became less independent until, about six years ago, she was so severely disabled that she became bedbound.
Govender was one of an estimated 70,000 New Zealanders with dementia, a number projected to more than double in the coming decades as the population ages. Experts say the country is not prepared to handle this burden.
“This is a grossly and chronically under-resourced sector and it has been that way for a very long time,” says Catherine Hall, chief executive of Alzheimer’s New Zealand. Decades of poor planning and underfunding have created significant gaps at every level, from prevention to diagnosis, early intervention, rest homes, and palliative care.
A 2021 study by researchers at the University of Auckland found that dementia accounts for 9 percent of all deaths and costs the country $6.2 billion annually. However, these figures don’t capture the enormous strain the condition puts on individual families.
For caregivers, dementia can mean years of demands that many find difficult to sustain, on top of the grief of progressively losing a loved one. It can be exhausting and isolating — even for someone as resourceful as Silochan.
As Govender’s condition worsened, Silochan quit her corporate job to spend more time at home with her mother. She started her own business, a fast-food chicken restaurant in a shopping mall, which she managed mostly from Govender’s bedside. She fully embraced the role of caregiver.
Most people with dementia go into care facilities when they need round-the-clock nursing, experts say. It is not known exactly how many families are in the Silochans’ position of providing hospital-level care at home. Dr. Bryan Betty, chairman of General Practice New Zealand, says it is “not uncommon” but not the norm. Hall, at Alzheimer’s NZ, says it is more typical among Māori, Pacific, and Asian families, although she believes it will become more common among all groups as dementia cases rise and aged care facility beds become scarcer.
For families who choose to keep their relatives at home, there is a loose network of medical, social, palliative, and other services in the community to support them, provided by primary practices, Te Whatu Ora, dementia charities, Hospice, and other organizations. However, these services are often in a precarious state, people in the sector say.
Years of underfunding, understaffing, and rising demand have resulted in a patchwork of services that are disjointed, inconsistent, and inequitable. Caregivers can find the system exhausting and confusing to navigate and may not even be aware of the support available to them.
As a result, some families end up isolated, particularly in moments of crisis.
Over the years, Silochan received support from district nurses at Te Whatu Ora Counties Manukau and local hospice services. However, her main ally in caring for Govender was a GP from the Pakuranga Medical Centre (acquired in 2021 by Tend, an Auckland-based primary care provider), who visited their family home a few times a year and whenever Govender’s condition worsened.
Medical records shared by Silochan with the Weekend Herald indicate that this GP made at least nine visits to their home between August 2021 and May 2023. Silochan says the doctor provided “amazing” care, and her trust appears to have been reciprocated. After one visit, the GP noted that Silochan “overall takes very good care of mum and manages the day-to-day very well.”
In February, Govender developed a lung infection that made it difficult for her to breathe. According to the clinical records, the GP visited three times in as many weeks. After one examination, the doctor discussed with Silochan the possibility that Govender might experience a “sudden significant deterioration and pass away.”
“We are hoping that she will pull through,” the doctor noted.
This time, Govender did pull through. The lung infection cleared, and the Silochan household soon returned to its normal rhythm.
In June, Silochan noticed a bedsore developing above Govender’s tailbone.
She was worried. Although dementia tends to progress slowly, a person in the later stages can deteriorate rapidly if there is an incident such as a fall, infection, or pressure injury. Silochan had been vigilant in trying to prevent such an incident, knowing it could be catastrophic.
The wound started as a small nick but soon grew into what Silochan described as a “raging fire.”
Not long after this, Silochan received an email from Pakuranga Medical Centre advising her that Govender’s GP was leaving in a week.
Silochan was startled. The prospect of changing doctors made her uneasy. She became even more anxious when she spoke to the GP on the phone later that day and was told the practice couldn’t provide another doctor who would treat Govender at home.
What Silochan didn’t realize was that her family’s situation had collided with a nationwide crisis in the primary care sector.
General practices across the country are being battered by funding pressures, rising numbers of patients with complex problems, and drastic shortages of doctors and other staff. Clinicians are carrying unsustainable caseloads. Many doctors are burning out. Older GPs are retiring and not being replaced.
For patients, these shortages are causing longer waits for GP appointments and restricted and disrupted services. Vulnerable and elderly patients are losing trusted relationships with doctors who know their medical histories and can act as guides and advocates as they move through the system.
This loss of continuity can be hugely detrimental and is a “real hidden problem,” says Betty at General Practice New Zealand.
In this context, GPs say home visits have become hard to sustain.
Betty says the visits are seen as too costly under the current “capitation” funding structure, and most clinicians are now too overloaded to provide them. Time that a GP spends traveling to and from a home session is time they won’t spend seeing multiple other patients at their clinic who may also have pressing needs. Some doctors still do home visits after hours, in their own time, Betty says, but many have stopped.
Dr. Graham Denyer, Tend’s chief medical officer, says Pakuranga Medical Centre’s policy is to provide home visits if a doctor is available and it is “clinically appropriate,” but the practice “cannot always provide home visits at the request of patients or their families. This is primarily due to the level of demand for GP services as against GP availability, and operational requirements.”
Denyer did not comment on the specifics of Govender’s case due to privacy laws but stated that Tend aims to “work with our patients and their representatives to help them access alternative care options. These can include telehealth consultations, in-person clinic appointments, referrals to community and specialist services, and consideration of transfer to care facilities where patients require higher levels of support. We prioritize timely communication with patients and families about care options.”
Silochan was adamant that Govender needed to be examined by a doctor at home, given the complexity of her condition, so she informed Pakuranga Medical Centre that she would find another primary practice to take over.
Meanwhile, district nurses from the community health team at Te Whatu Ora Counties Manukau were visiting the house several times a week to dress Govender’s bedsore.
As the wound worsened, the nurses urged Silochan to get a GP to review the injury.
However, when Silochan contacted other practices in Auckland, she couldn’t find a GP willing to take on a new patient who needed home treatment.
Growing desperate, Silochan emailed Te Whatu Ora for advice, reached out to Prime Minister Chris Hipkins’ office, and posted a plea on a community Facebook page.
“I am in need of urgent help, please,” she wrote one day.
“I am exhausted calling, BEGGING for a GP to do a home visit,” she said on another occasion. “I’ve called almost all the medical centres around my home and nobody is prepared to help.”
Silochan returned to Pakuranga Medical Centre and pushed the practice to send a GP. Didn’t they have an obligation to continue the service Govender had been receiving for years?
Staff and clinicians at Pakuranga Medical Centre had several discussions about how to manage Govender, according to medical records reviewed by the Herald.
After one discussion, a manager wrote: “We have an obligation to provide ongoing care in the form of online appointments and in-person care, but we do not have an obligation to continue home visits. There are currently no GPs available to take on home visits.”
Staff considered alternatives, including arranging a video consultation with a GP while a district nurse was with Govender. They also suggested referring Govender to the specialist community service for geriatric patients at Te Whatu Ora Counties Manukau, according to the notes. (It is unclear if the referral was ever made, and Silochan says she was not aware of it.)
In early July, Govender’s former GP, now officially no longer working for the practice, returned to the house for a final visit.
The GP noted that the wound was worsening but that Govender “appears mostly comfortable, alert, and undistressed.” Govender did not need to be admitted to the hospital at that time, the GP said, but her condition would need to be closely monitored.
Over the next month, Govender’s notes indicate, Tend provided at least five more consultations by phone or video, with four different doctors from its three clinics in Auckland.
One of those video consultations, with a doctor who didn’t work in Pakuranga, was particularly frustrating for Silochan. The GP didn’t know Govender’s history and made it clear he thought his local colleagues should examine her, not him.
“I am in a different catchment area and unfamiliar with the details,” the doctor wrote afterward, according to Govender’s records. “I felt the issue was better dealt with by the doctors in the practice that know her rather than starting from fresh.”
Silochan expressed her frustrations with the service, and the GP explained that most practices now don’t offer home visits because they are “cost prohibitive” and “fraught with difficulties once you arrive.”
The GP seemed to sympathize: “The patient’s situation is made more difficult due to the excellent care being provided by the family,” he wrote. “Normally, the patient would be in a care environment with doctors available and on call for review and access to advice from hospital specialty services.”
However, the GP admitted he wasn’t the best person to treat Govender’s wound, even if he could visit the house. “I’m not sure that I could offer any solutions,” he said. “I think this wound will need intensive nursing.”
The GP referred Govender to a hospice for palliative care.
That week, according to Silochan, Te Whatu Ora’s district nurses escalated Govender’s case to a wound specialist at Middlemore Hospital, who recommended using a vacuum-assisted dressing. Then, a doctor from a local hospice came to examine Govender. The hospice doctor assured Silochan that the negative-pressure dressings would help.
“The only thing you will need is time,” Silochan recalls him saying.
After weeks of anguish, it seemed that Silochan had finally found an arrangement that, while not ideal, might be workable until she could find a new permanent GP. But time was something she didn’t have. Govender died a few days later.
As Govender entered her final moments, the “tight five” crowded into her small bedroom. Silochan cradled her mother and sang to her.
In all the years that Silochan had spent observing her mother’s decline, she says she never truly confronted the prospect of her dying. It was too big for her to contemplate.
Now that it had arrived, Silochan wanted to scream. But she willed herself to hold it together. She didn’t want her distress to be the last thing Govender saw.
“I wanted Mum to know that I was going to be okay,” she says.
At about 5:50 pm, Govender quietly slipped away.
The cause of death would later be recorded as sepsis.
Silochan was devastated. In the weeks afterward, she replayed the events of the past few months over and over in her mind.
Was Govender’s death directly caused by the pressure wound? Could her life have been prolonged if the treatment had been different?
Would her final weeks have been as stressful and traumatic if Govender had been in a care home or hospital?
There were no clear answers, support workers and medical professionals said.
Considering Govender’s advanced age, frail condition, and comorbidities, it was impossible to say with certainty that any intervention could have prolonged her life. And care homes and hospitals have their own myriad problems that families can find distressing.
But none of that was much consolation to Silochan. She had labored for 16 years to make the final phase of her mother’s life as peaceful as possible, only for it to end with so much stress and despair. It felt as if they’d fallen through the cracks when it mattered most.
“We were not supported towards the end,” Silochan says.
Silochan was angry at Pakuranga Medical for not continuing home visits despite her pleas. She intends to file a complaint with the Health and Disability Commissioner about the care the practice provided at the end of Govender’s life.
Denyer, chief medical officer at Tend, said in a statement that Pakuranga Medical Centre acknowledges the family’s grief and what it has been through in recent months, but after conducting an internal review, concluded that its staff “acted with professionalism and dedication and provided an appropriate standard of care.”
Denyer added: “Pakuranga Medical Centre remains committed to providing quality healthcare despite systemic constraints, and we believe that our efforts in providing ongoing care to Mrs. Govender reflect that commitment and the dedication of our staff.”
Silochan was also critical of Te Whatu Ora. She had reached out to the national health authority when she was struggling to find a GP and was mystified that it hadn’t become more involved in Govender’s care.
Why hadn’t the community nurses escalated Govender’s case?
In a statement, Te Whatu Ora Counties Manukau acknowledged that communication between primary and hospital services is sometimes “not as effective as it should be” and that efforts are underway to improve integration. Silochan also raised concerns about the care provided by the district nurses, which Te Whatu Ora is investigating.
As the weeks passed, Silochan sought constructive ways to channel her grief. She met with executives from Te Whatu Ora, who informed her about a national project to improve palliative care and assured her that her experience had “identified opportunities for improvement across the health system.” She also established a new charity, The Dolly Foundation, in honor of her mother, to advocate for people in advanced stages of dementia.
Silochan is not alone in her advocacy. Last month, Alzheimer’s NZ and Dementia NZ jointly published a paper urging the new National-led coalition Government to enhance support at all levels and provide an additional $127.3 million in funding over three years to charities in the sector.
Planning the charity gave Silochan a new sense of purpose and helped ease her grief.
However, there was one final indignity that haunted her, a cruel consequence of the primary care crisis she never anticipated. She wanted to share this experience to prevent other families from going through the same ordeal.
On the night Govender died, Silochan contacted a funeral service and was informed that a doctor needed to certify Govender’s death before her body could be taken. She called Pakuranga Medical Centre but couldn’t reach anyone.
Not knowing what else to do, Basanth called the police. Officers arrived at the house at 8:27 pm.
Over the next few hours, the police made “considerable efforts” to find a GP who knew Govender, according to their notes obtained by the Herald, but the doctors they contacted wouldn’t come because they “did not have enough up-to-date information to sign off the death.”
Apologetically, the police told Silochan that without a GP to certify the death, they would have to treat Govender as a victim of sudden death. The coroner would need to be notified, and Govender would be taken to the mortuary. There was a strict process governing how her body would be handled.
The officers asked Silochan to strip Govender down to her incontinence nappy.
An officer took photographs of her body.
Silochan was distraught. Govender had always been meticulous about her appearance. As Hindus, it was their custom to wash and dress the body and stay with it until the funeral. Silochan couldn’t bear the thought of her mother being taken away naked in a body bag and lying alone in a cold mortuary.
“This is the worst bloody undignified way for her to go,” Silochan recalls saying. “I’m not going to allow you to do that to her.”
The officers were sympathetic but had to follow protocols.
Silochan pleaded. Finally, the officers relented and agreed that she could at least dress Govender before she was taken away. So, while the undertaker waited, Silochan bathed her mother one last time, dressed her in a favorite pink nightgown with matching socks, and did her hair and makeup.
“I dressed her up beautifully,” her daughter says.
‘Dementia: A family’s frantic search for help’, Weekend Herald (online), 16 Dec 2023 A012 ‹https://infoweb-newsbank-com.ezproxy.sl.nsw.gov.au/apps/news/document-view?p=AWGLNB&docref=news/195F1F8CDE268568›