Susan Lymbery has spent more than three decades advocating for and looking after her son Graeme.
Graeme, who is now 41 years old, was diagnosed as having a brain tumour while he was in kindergarten.
He had two surgeries; the first to relieve the pressure on the brain the tumour was causing, and the second was to get a biopsy of the tumour, which was diagnosed as being inoperable and invasive.
Graeme then underwent six weeks of chemotherapy and sent home under the care of the family.
Despite medical expectations, the tumour calcified so that it couldn’t spread anymore and Graeme has survived for decades, but his physical and mental condition continues to deteriorate and Lymbery and her family have had to change their lifestyles to accommodate looking after him.
Lymbery said the family is grateful that Graeme was accepted to live in disability housing in Nanaimo, but they live in the Cowichan Valley and it’s become increasingly more difficult for them to look after Graeme in any meaningful way.
Lymbery has had six strokes over the last year, and she blames her medical issues mainly on stress related to Graeme and his situation.
She takes issue with the province because she believes Graeme and her family were virtually abandoned by the medical system after Graeme’s initial diagnosis, surgeries and chemotherapy.
Currently, Lymbery is fighting hard to have the amount of respite time the province allots to Graeme increased from just two hours a week.
She said two hours is just not enough time for a respite worker to do Graeme’s laundry and little more.
“We were initially told by a home-care worker that two to three hours a week is all that Graeme is entitled to,” Lymbery said.
“But we recently discovered that Graeme is actually entitled to up 120 hours of respite care a month, but were never told that before.
Without proper respite care for Graeme, we are unravelling as a family.”
A spokeswoman for Island Health said she can’t speak about individual cases but, generally, the amount of respite time needed depends on the needs of the patients.
“People’s medical conditions change, with some improving and some declining, so respite hours are adjusted all the time,” the spokeswoman said.
“Each patient’s case manager determines how many hours are needed and there’s a very wide range of hours that each patient can have access to if it’s determined that they are needed. The care of our patients is a top priority at Island Health.”