Dementia: A family’s frantic search for help
For Kamanie Silochan, it was a source of pride that she nursed her severely disabled mother instead of putting her in a rest home or hospital. But an arrangement that worked so well for so long fell apart when the family suddenly lost its GP amid a medical crisis. Alex Spence reports on how even the most dedicated families can be left feeling despairing and isolated after years of living with dementia.
It was about 2.30pm on a Wednesday in August when Kamanie Silochan realised her mother was dying.
Silochan, a 54- year- old East Auckland businesswoman, was at her family home in Dannemora, which she shared with her husband, Basanth, a project manager; their two adult children; and Silochan’s elderly mother, Subhuma Govender. They were such a close unit that Silochan, a dedicated All Blacks fan, referred to them as the “tight five”.
At 89, Govender — known since childhood as “Dolly” — had advanced dementia, an umbrella term for conditions that cause a decline in thinking, behaviour, and a person’s ability to perform daily activities. For six years, she had been bedbound, unable to walk, talk, go to the toilet, or feed herself.
The Silochans had kept Govender at home with them long after most dementia patients needing hospitallevel attention have moved to a care facility. Silochan tended to Govender around the clock, cleaning and feeding her, administering medications, and moving her regularly to stop pressure injuries developing on her brittle skin.
Govender’s bedroom was a testament to Silochan’s attentiveness. Next to the narrow hospital- style bed where Govender lay was a stack of plastic boxes, in which Silochan meticulously ordered the various medical supplies needed to keep her mother comfortable. Govender’s clothes, her bedding, the cushions, and the curtains were all matching pink, Govender’s favourite colour.
For 16 years, Silochan had been one of a silent army of New Zealanders who provide more than a million hours a week of unpaid care to relatives with dementia, often with limited support and at a high cost to their wellbeing. Silochan didn’t consider this a hardship: She found joy in lavishing attention on her mother and took pride in the thought that, by nursing Govender themselves, her family wasn’t adding to the burden on the overstretched health and social care systems.
Lately, though, Silochan had come to fear that the arrangement that had worked so well for so long was unravelling.
Soon after Govender’s bedsore developed, the GP who treated her regularly quit for personal reasons. The practice where the GP worked said it didn’t have another physician who could treat Govender at home. It offered video consultations instead.
Silochan insisted that home visits were essential, both to oversee the wound now and to treat Govender in the future. Govender had a heart condition and was susceptible to lung infections, and Silochan worried that a doctor would miss something important if they only saw her remotely. But when Silochan searched for another practice, she couldn’t find one that would agree to do examinations at home.
Meanwhile, Govender’s bedsore burrowed down to the bone. Then she started refusing food.
Then her breathing changed. This wasn’t the sound that 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 her own children, Govender lived with them. And when they migrated to New Zealand in 1996, Govender came too. Govender ran their household, cooked every night, and helped raise their kids.
Govender was a person of 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. At first, the symptoms were minor. She repeated herself in conversation and forgot that she had left pots simmering on the stovetop. Gradually, Govender became less and less independent until, about six years ago, she was so severely disabled that she was bedbound.
Govender was one of an estimated 70,000 New Zealanders with dementia, a number that is projected to more than double in the next few decades as the population ages. It is a burden that experts say the country is not close to being prepared to deal with.
“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 the charity Alzheimer’s New Zealand. Decades of poor planning and underfunding have created vast gaps at every level, people in the sector say, from prevention to diagnosis to early intervention to rest homes to palliative care at the end of a patient’s life.
According to a 2021 study by researchers at the University of Auckland, dementia accounts for 9 per cent of all deaths and costs the country $ 6.2 billion annually, but those figures don’t capture the enormous strain the condition puts on individual families living with the disease.
For caregivers, dementia can mean years of demands that many people find difficult to sustain, on top of the grief of progressively losing a person they love. It can be exhausting and isolating — even for someone as seemingly resourceful as Silochan.
As Govender deteriorated, Silochan quit her corporate job so that she could spend more time at home with her ( at one time Silochan was an executive at APN, the media company that formerly owned the Herald). Silochan started her own business, a fast- food chicken restaurant in a shopping mall, which she figured would provide flexible hours, and ran it mostly from Govender’s bedside. And she threw herself into the role of caregiver.
Most people with dementia go into care facilities when they reach the point of needing round- the- clock nursing, experts in the sector say. It is not known exactly how many families are in the Silochans’ position of continuing to provide hospital- level care at home, according to Te Whatu Ora- Health New Zealand; Dr Bryan Betty, chairman of General Practice New Zealand, says it is “not uncommon” but not the normal arrangement. Hall, at Alzheimer’s NZ, says it is more typical among Ma ¯ ori, Pacific, and Asian families although she believes it will become more common among all groups as more people get dementia and beds in aged care facilities are increasingly scarce.
For those 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 organisations. In reality, 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 that is available to them.
As a result, some families end up isolated, particularly in moments of crisis.
Over the years, Silochan drew on support from district nurses at Te Whatu Ora Counties Manukau and local hospice services. But her main ally in caring for Govender, she says, was a GP from the Pakuranga Medical Centre ( acquired in 2021 by Tend, an Auckland- based primary care provider), who visited their family home to review Govender a few times a year and whenever her condition deteriorated.
Medical records that Silochan shared with the Weekend Herald indicate that this GP made at least nine visits to the family home between August 2021 and May 2023. Silochan says the doctor provided “amazing” care and her trust appears to have been reciprocated, according to the clinical records. 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 picked up a lung infection that made it hard for her to breathe. According to the clinical records, the GP visited the property three times in as many weeks. After one of those examinations, the doctor wrote that they discussed with Silochan the possibility that Govender may 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 soon the Silochan household fell back into its normal rhythm.
IN JUNE, Silochan noticed the 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. And she became even more anxious when she spoke to the GP on the phone later that day and the GP told her the practice couldn’t provide another doctor who would treat Govender at home.
What Silochan didn’t realise was that her family’s situation had collided with a nationwide crisis in the primary care sector.
General practices across the country say they 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 travelling 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 would not comment on the specifics of Govender’s case because of privacy laws but commented generally that Tend tries to “work with our patients and their representatives to assist them in accessing 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 prioritise 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 told Pakuranga Medical Centre that she would find another primary practice to take over.
At the same time, district nurses from the community health team at Te Whatu Ora Counties Manukau were coming to the house several times a week to dress Govender’s bedsore.
As the wound worsened, Silochan says the nurses urged her to get a GP to review the injury.
But when Silochan called around other practices in Auckland, she says she couldn’t find a GP willing to take on a new patient who needed to be treated at home.
Silochan grew desperate. She emailed Te Whatu Ora asking for advice. She emailed Prime Minister Chris Hipkins’ office. She 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 went back to Pakuranga Medical Centre and pushed the practice to send a GP around. Didn’t it have an obligation to keep providing the service Govender had been receiving for years?
Staff and clinicians at Pakuranga Medical Centre had several conversations about how to manage Govender at this time, according to medical records reviewed by the Herald.
After one such 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 that are able to take on home visits.”
Staff discussed alternatives including arranging a video consultation with a GP while a district nurse was with Govender. They also floated the possibility of referring Govender to the specialist community service for geriatric patients at Te Whatu Ora Counties Manukau, according to the notes. ( It is not clear that 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, came back 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 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 afterwards, 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 told the GP of her frustrations with the service and he explained that most practices now
don’t offer home visits because they are “cost prohibitive” and “fraught with difficulties once you arrive”.
The GP appeared to sympathise: “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 where there are doctors available and on call for review and access to advice from hospital specialty services.”
But the GP said 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, in Silochan’s account, Te Whatu Ora’s district nurses escalated Govender’s case to a wound specialist at Middlemore Hospital, who recommended using a vacuumassisted 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 telling her
After weeks of anguish, it seemed that Silochan had finally stumbled into an arrangement which, if not ideal, might be workable until she was able to 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 5.50pm, Govender quietly slipped away.
The cause of death would . later be recorded as sepsis.
Silochan was devastated. In the weeks afterwards, she ran 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 are fraught with myriad other problems that families can find distressing to deal with.
But none of that was much consolation to Silochan. She had laboured for 16 years to make the final phase of her mother’s life as peaceful as she could, 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 that it hadn’t continued providing home visits despite her pleas. She says she intends to make a complaint to 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
In all the years that Silochan had spent observing her mother’s decline, she never truly confronted the prospect of her dying. Now that it had arrived, Silochan wanted to scream.
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 referred Govender up the chain?
In a statement, Te Whatu Ora Counties Manukau said communication between primary and hospital services is sometimes
“not as effective as it should be” and that it is working to make them more integrated. Silochan also complained about aspects of the care provided by the district nurses, which Te Whatu Ora said it is investigating.
As the weeks went by, Silochan tried to channel her grief in constructive ways. She met executives from Te Whatu Ora who told her about a national project to improve palliative care and assured her that her experience had “identified opportunities for improvement across the health system”. And she registered a new charity — named The Dolly Foundation in honour of her mother — which she intends to use to advocate for people in advanced stages of dementia.
Silochan will not be alone in pushing for more recognition and services for the condition: Last month, the charities Alzheimer’s NZ and Dementia NZ jointly published a paper urging the new National- led coalition Government to improve support at all levels and provide another $ 127.3 million in funding over three years to charities operating in the sector.
Silochan said that planning the charity gave her a new sense of purpose and helped take the edge off her grief.
But there was one final indignity that nagged at her, a cruel product of the crisis in primary care that she never anticipated until it happened. She wanted others to know about it so that no other family would experience it.
On the night that Govender died, Silochan contacted a funeral service and was told that a doctor would have to certify Govender’s death before her body could be uplifted. Silochan says she called Pakuranga Medical Centre to send a doctor but couldn’t get hold of anyone.
Not knowing what else to do, Basanth called the police. Officers arrived at the house at 8.27pm.
Over the next few hours, the police made “considerable efforts” to find a GP who knew Govender, according to their notes, which the Herald obtained, but the doctors they reached wouldn’t come because they “did not have enough up- to- date information to sign off the death”.
Apologetically, the police told Silochan that in the absence of a GP to certify they would have to treat Govender as a victim of sudden death. The coroner would have to be notified. 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 how she presented herself. As Hindus, it was their custom to wash and dress the body and stay with it until the funeral. Silochan couldn’t stand 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 they had to follow protocols.
Silochan pleaded. Finally, the officers relented and agreed that she could at least dress Govender before she was taken away. And so while the undertaker waited, Silochan bathed her mother one last time, robed her in a favourite pink nightgown with matching socks, then did her hair and makeup.
“I dressed her up beautifully,” her daughter says.