Spousal care policy has wrecked us, says man with terminally ill wife

A Port Rexton man who quit his job to take care of his terminally ill wife is distraught over a Newfoundland and Labrador government policy that does not allow him to be a paid caregiver for his spouse.

Rodney Miller says he's not leaving his wife's side in her dying days, but that government is making their already difficult ordeal even harder by not providing financial support.

"I'm going to stay with her up until days end and there's nothing or nobody going to change that for me," Miller told the St. John's Morning Show.

"But while I'm here sitting and watching my wife to deteriorate, I could possibly be getting paid for a job that somebody else is getting paid for."

This cancer has raped us financially, mentally and physically. And I've got nowhere else to turn. Nowhere.- Rodney Miller

Miller's wife Elizabeth Shaw-Miller was diagnosed with stage four lung cancer in the fall of 2014, with no hope of recovery.

When they realized the extent of her illness, Miller said he had no choice but to leave his carpentry job in the Northwest Territories and come home to care for her full time.

Miller filed for employment insurance in January, but that ran out. He applied for social assistance, but was turned down because he had been on EI.

Now he and his wife have no source of income as she lives out her final days.

'I got shunned'

The government provides Elizabeth with a paid home care worker for 20 hours a week, but Miller wondered why he couldn't be paid for the care he was already providing.

As his wife's round-the-clock caregiver, Miller asked the provincial and federal government for compensation but was quickly turned away.

The exclusion of spouses recognizes the natural caregiving role inherent and expected in this type of relationship.-Newfoundland and Labrador Department of Health

"Everywhere I turned, all the government officials, the MHAs, the MPs, they shut me down at the doorstep and said absolutely not...I got shunned. My god. I got stopped at the front door. I didn't know where else to turn," he said.

"I tried to explain to them that I would be the best caregiver for my wife, and why should somebody else come and sit in my house and care for my wife when I'm here 24/7 anyway."

The Department of Health and Community Services will provide funding for a hired worker or a family caregiver to deliver home care — unless that caregiver is a spouse.

"The exclusion of spouses recognizes the natural caregiving role inherent and expected in this type of relationship," a department spokesperson said in a written statement to CBC.

Policy is discriminatory, says Miller

Miller said this policy is discriminatory and unfair. A spouse, he said, can provide better care than any hired worker and shouldn't be denied compensation for their efforts.

"I'm a husband first and I'm going to stay with my wife whether the policies are in place for me or not," Miller said.

"She's at days end, could be today tomorrow [or] next month — I don't know, I'm not God — but I tried to explain to them that I would be the best caregiver for this woman."

'Life stopped' with cancer

Miller said that without financial help, he and his wife are in dire straits.

"This cancer has raped us financially, mentally and physically. And I've got nowhere else to turn. Nowhere," he said.

"We were just starting to enjoy our lives, taking trips and vacations together, which we had never done before. But when she was diagnosed with this cancer everything stopped, life stopped...We had money put away for a rainy day, but it's very expensive to have cancer."

I'm a husband first and I'm going to stay with my wife whether the policies are in place for me or not.- Rodney Miller

Miller said his wife still has a strong and active mind, but is feeling the stress of their financial plight.

"She just cries a lot because we're not used to this lifestyle and she's feeling the disparity of it all," he said.

"She sees what I go through on a daily basis, fighting tooth and nail, and she feels for me."

Miller said he's exhausted and doesn't know what to do from here. Despite her terminal illness, Miller said it's his wife who gives him the strength to keep going.

"This cancer got me beat. She's the one with it, but as a spouse, it got me beat. I'm tired. I'm tired of living with it and dealing with it on a daily basis, but I'm going to keep my head up just for her."