A B.C. ALS patient who will soon need a feeding tube to eat and drink may have to wait 11 hours between meals because her daily care aide isn't allowed to insert the device.

Betty Jenkins was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, shortly after she and her husband realized their dream of moving onto Bowen Island two years ago.

Since then, the disease has rapidly progressed, attacking the 61-year-old former teacher's nerve cells and robbing her of muscle control.

Jenkins is still able to swallow, but ALS will eventually prevent her from taking any food orally. The feeding tube will be her lifeline, but the aide who cares for her every day while her husband is at work isn't authorized to insert it.

Using a communication device controlled by a head mouse, Jenkins expressed her concerns with CTV News.

"Worried about when I can't eat orally and I only have one feeding per day," she said. "I would have to wait 11 hours without liquids until Earl gets home."

Vancouver Coastal Health provides one nurse visit a day in the morning. The nurse is allowed to provide the feeding tube, but VCH spokeswoman Anna Marie said a care aide is not.

"Tube feeding is not part of their scope of practice, it's not what they do," she said.

The health authority says there are risks to tube feeding, including choking, and it's rarely done in the community.

That's of little comfort to Jenkins' family, however, who can't understand why her husband can be trained to feed her but her care aide cannot.

The family is hoping Vancouver Coastal Health will come up with a home care plan that will meet their needs – but say moving Jenkins into a full-time care facility would devastate her in her fragile state.

Wendy Toyer, executive director of the ALS Society of BC, is calling on the province to provide more support for families struggling to care for loved ones with ALS.

Toyer says B.C.'s approach to ALS patients is "backward and lagging behind other provinces."

Putting ALS patients in a hospital or care home is more costly than caring for them at home, Toyer says, but the government is providing only minimal support for families trying to do so.

There are 300 people living with ALS in B.C.

With a report from CTV British Columbia's Mi-Jung Lee