'Living hell': Call for more family support as mother dies days after cancer diagnosis

'Living hell': Call for more family support as mother dies days after cancer diagnosis
Photo credit: Supplied / Nikki Gillespie.

It was just 13 days between Nikki Gillespie's mum Suzanne being diagnosed with cancer to her dying.

The experience was harrowing for her two children, who watched over her helplessly from her bedside as her condition rapidly deteriorated. 

As Suzanne lost her outgoing, caring and brave personality to weakness and delirium, daughter Nikki says she and her brother Mitchell felt alone. 

They are now campaigning for more support for the families of patients who find themselves in distressing and unexpected situations. 

"The help just wasn't there for us," Nikki told Newshub.  

"My brother would walk out of the room in tears, he's a 31-year-old man, not knowing how to deal with my mother being completely delusional.

"We just feel incredibly let down." 

Nikki (pictured with mum Suzanne) is calling for mental health services to be offered in hospitals.
Nikki (pictured with mum Suzanne) is calling for mental health services to be offered in hospitals. Photo credit: Supplied / Nikki Gillespie.

The nightmare began when Suzanne drove herself to hospital on July 6 after sharp pains around her body that she had been ignoring became too much to bear. 

For four years, Suzanne had been a full-time carer for Nikki's grandmother, Patricia, putting her wellbeing before her own. 

Patricia passed away three weeks before Suzanne was admitted to Middlemore Hospital on July 6. 

Mitchell was living in Dunedin and Nikki was in Australia, having just travelled around Europe.  

Suzanne called Nikki to let her know she was ill, and immediately Nikki booked a flight home. She arrived back on July 10 and went directly from Auckland Airport to be by her mother's side.

But by then Suzanne's health was dramatically declining. The pair were told the next day tests revealed the devastating diagnosis that Suzanne had lung cancer that had spread into her bones. 

"It was affecting her spinal cord, she was basically paralysed from when I got there," Nikki said. 

As they adjusted to the heartbreaking reality that Suzanne's time was running out, Nikki says the doctor never offered any counselling services or grief support that she and Mitchell would have desperately appreciated.

"I'd just returned from a worldwide trip, walked in to see my mother in a hospital bed, it threw me for six, I didn't know what to say, who to talk to, nothing like that," she says. 

Nikki tried to absorb everything and grew frustrated there wasn't any social workers or staff offering support, or even just an invitation out of the room for a chat.

"Every day my mother was getting dramatically worse in different ways," she says.  

They were unprepared for what signs to look out for to know when she was in pain or how to handle the changes happening before them. 

Nikki says she and Mitchell asked what was going on, querying doctors and nurses about what to expect and what would come next but they felt uninformed.

Nikki sat by her mother Suzanne's beside as her condition declined.
Nikki sat by her mother Suzanne's beside as her condition declined. Photo credit: Supplied / Nikki Gillespie.

"We were asking questions but nothing was coming back to us." 

The pair are not alone in sharing their frustration at a lack of support for the families of patients. 

A Health and Disability Commissioner spokesperson told Newshub communication is a common issue in complaints to HDC, featuring in around 50 percent of all complaints received each year. 

"This indicates that although consumers may be complaining about a care/treatment issue, often they also feel that the manner of communication with them in the context of that care/treatment issue was inappropriate.

"This highlights the importance of clear and compassionate communication with people and their families." 

A palliative care doctor told Nikki that a social worker was there for help and support, but Nikki says she only briefly spoke to one about becoming a full-time carer if they were to take Suzanne home and felt brushed off. 

She believes that once it was raised that they would take Suzanne home, her mother became a low priority and the focus turned to getting them out. 

The social worker eventually got wind from different departments that the family was getting agitated, so she brought her superior in. 

Nikki claims the woman said that in the 10 years she had worked at Middlemore Hospital, no family had ever asked her for counselling services or support systems. 

"My brother and I were dumbfounded by that," Nikki says. 

"We whole-heartedly do not believe that, in 10 years for no one to ask for help is ridiculous."  

On July 23 the family and medical staff had a meeting to acknowledge communication and care issues that had been raised. 

Minutes seen by Newshub outline the family expressed they would have liked to be referred to or introduced to counselling options. 

Concerns were discissed about a decline in care after it was discussed Suzanne would go home, which was to be rectified with the charge nurse. 

"We walked into that meeting and said 'we just needed some help and we needed questions answered,'" Nikki says. 

Nikki's brother Mitchell (pictured with Suzanne) struggled watching their mum lose her personality.
Nikki's brother Mitchell (pictured with Suzanne) struggled watching their mum lose her personality. Photo credit: Supplied / Nikki Gillespie.

"It wasn't going to help our situation but we thought maybe it could help somebody else's, that was our goal going in there." 

They also expressed that the family was unhappy about the lack of insight. 

Changes were promised and stronger standards were assured, but Nikki and her family were never able to see the follow-through. 

Suzanne passed away the next day on July 24 aged 59. 

Nikki said that morning, in light of the meeting, a counsellor came in and tried to talk to her but she had shut down by then. 

"I had this feeling that my mother didn't have long left and I didn't want to leave her." 

She believes "there's no point" having people coming at the end, it needs to be at the beginning.

"At the state when I was most vulnerable when I found out my mother was terminally ill, if someone had said to me 'we've got these options available, would you like to talk to somebody?' I would have said 'hell yes, I have all these questions'.

"I needed to prepare myself. Coming in right at the end, I don't want to talk to anyone, I had just experienced living hell. It's like they don't understand mental health." 

Nikki knows that nothing will change for her and her brother's situation but believes by speaking out, "possibly something could change for somebody else". 

A Counties Manukau Health spokesperson told Newshub that while it acknowledges distressed families can be experiencing difficulties and "would like to offer more" there's an expectation that needs are met through external resources. 

"While the DHB has an ongoing focus on the provision of counselling services to patients who are undergoing cancer treatment, through our palliative care and liaison psychology teams, we are not always able to provide the same level of support to the extended whanau.

"The assumption we make is that the needs of the wider whaanau will be met by counselling and support services in the community that are resourced to provide this care."

Nikki says their situation was made so much harder by feeling like no one cared or helped them go through the changes their mum would go through. 

"I'd love to see counselling services provided right at the beginning, right at the start."

She urges others to ask what services are available straight away and be vocal about concerns. 

"People can't deal with this stuff on their own, it's too massive, it needs to be a constant thing."

She believes that right from hearing "terminal illness" and "months to live", the next step should be "we've got these people to talk to", "we've got these services provided". 

"There needs to be a support network for the family, and for the patient, for mental health as well as physical health."

Newshub. 

Contact Newshub with your story tips:
news@newshub.co.nz