Described as a ‘godsend,’ Manly hospice turns one
When the Manly Adolescent and Young Adult Hospice (AYAH) opened on 15 February last year, it made a huge difference to Heike Fabig. Her son Bodhi Boele is 17 and lives with an inherited neurological disorder, hereditary spastic paraplegia (HSP).
“I cannot express how much easier it is for us and for Bodhi to know that there is somewhere where he’s safe, where they know him, where they understand his condition, where he feels he doesn’t have to worry,” Heike explains, calling AYAH a ‘home away from home’.
Bodhi Boele.
The hospice is a first for Australia, as it caters to the needs of 16-to 30-year-old patients with life-limiting illnesses.
The $19.5 million eight-bed facility is located on part of the former Manly Hospital site on North Head headland and has two family accommodation units and lounges.
AYAH service manager Tayia Yeates says the team has focused on developing respite, symptom management and end-of-life models of care over the year. “Just working collaboratively to develop those models of care and make sure they meet the needs of our patients, I think has been a significant highlight for us,” Tayia explains. “Also working with our patients and families and gaining their confidence to leave family members in our care.”
“I think that’s a major achievement with this particular group of patients.”
Tayia says the statewide service has met the needs of the referrals they’ve received, adding that approximately 70 to 75 per cent of admissions are for respite care, with some moving on to end-of-life care.
During the past year Bodhi and his family have visited AYAH a handful of times, travelling from their South Coast home and staying for up to five days at a time. “What really makes it home is just the way the staff deal with the patients,”
AT AYAH, Heike and Bodhi benefit from having his doctors and supporting medical staff available to collaborate on his care. “Our kids are complicated cases. They don’t fit the boxes and sometimes we need all the brains together.” Heike says.
She explains that Bodhi’s condition is degenerating quickly and he suffers neuropathic pain on his feet, legs, arms, face and lips. “He has been living with endless chronic pain for two years now,” she says. “It just gets progressively worse.”
Bodhi finds talking and swallowing difficult. “On his 18th birthday he wants to access voluntary assisted dying because he’s had years of pain and the medication takes the edge off, but it’s not really dealing with it,” Heike explains.
Of Heike’s three sons, two of them inherited HSP: Kai and Bodhi. In 2018, Kai’s condition reached end-of-life stage. He didn’t want to be in hospital palliative care, preferring to stay at home. AYAH had not yet been built, and at 17, he felt too old for Bear Cottage, a palliative care service for children up to 18 years of age.
AYAH Service Manager Tayia Yeates
At that time, Heike and her husband Richard Boele had little support in managing Kai’s home palliative care up to his death.
She says having AYAH this time around to help manage Bodhi’s palliative care is like ‘day and night’ in comparison. Heike says Bodhi has chosen AYAH as the place to spend his last days.
In the meantime, he’s completing his bucket list: he’s visited Uluru and met his favourite artist Grace Petrie on Zoom.
When asked why he likes AYAH, Bodhi says: “They can make people feel comfortable and safe.” Adding that, ‘it’s fun’ because he can do music there.
“I honestly cannot praise that place enough,” Heike says. “It’s an absolute godsend.”
Staff and patients at AYAH celebrated the one-year milestone with a barbecue. Manly MP James Griffin was involved in the project from the beginning, and recently rallied the community to raise funds for a van for AYAH. “Having met with many young people who use the service and their carers, there is nothing I am more proud of in my political career than this project,” says Mr Griffin.
To donate to AYAH, visit northfoundation.org.au