Ont. woman in battle with Lou Gehrig's Disease also battles to get home care
2 hours ago

A Sudbury, Ont., woman's muscles are slowly wasting away in a losing battle with Lou Gehrig's Disease and she cannot bathe, eat or change her adult diaper, but the little energy she has left is being spent fighting a battle to get the care she so desperately needs.

Minna Mettinen-Kekalainen has not received home care since mid-November and survives day to day on the kindness of friends, but they have neither the time nor the training to replace the care of a registered nurse.

Mettinen-Kekalainen, 42, also has Asperger Syndrome, an autism spectrum disorder, which can make her difficult to deal with - so the home care nurses just don't, her advocates say.

She nearly gave up, going on a hunger strike because she started feeling like she didn't deserve care, said France Gelinas, an Ontario politician who has taken on Mettinen-Kekalainen's cause.

"If nobody feels that I am worth care, then maybe I am not worth anything. Maybe I should just go and die," Gelinas said of Mettinen-Kekalainen's state of mind.

Not so long ago Mettinen-Kekalainen was an active member and founder of the Sudbury Rowing Club's program for disabled athletes. She was paralyzed from the waist down years earlier in a motorcycle accident. For three years she has had amyotrophic lateral sclerosis, or ALS - also known as Lou Gehrig's Disease, which destroys motor neurons through which the brain controls the voluntary muscles throughout the body.

Now she is essentially bedridden and has not been bathed in three months.

She wears the same clothes day and night, which these days include her winter jacket and winter boots. She lies in bed thinking mostly of her children, who do not live with her anymore. Her 18-year-old son left and she sent her 16-year-old daughter to live with relatives in Vancouver.

"It is definitely a process of getting used to drastic changes in lifestyle, yet it's also unpredictable to never know what will deteriorate next or how long will functionality remain," Mettinen-Kekalainen said in an email. She prefers to communicate that way now as talking is becoming more difficult.

Her friend Jason Bushie picks up most of the slack left by the absence of home care nurses.

"In the last six months I've seen her deteriorate from a very independent person to a person who now requires quite a bit of assistance in daily tasks," he said.

"This is a combination of the ALS and the lack of quality home care."

Mettinen-Kekalainen has posted a harrowing video on YouTube, which she hopes will draw more attention to her situation. In it she manages a few words per breath and speaks softly about how she feels her basic human rights are being trampled.

Her Asperger Syndrome means she has poor interpersonal skills and that can come across as difficult, Gelinas said. When she was still receiving home care Mettinen-Kekalainen would tell the nurses they were not completing tasks properly and threatened to report them to the College of Nurses of Ontario.

That behaviour was interpreted to mean working conditions for any nurse who might visit her were unsafe. Now, all three contracted nursing agencies in the area refuses to provide Mettinen-Kekalainen care, Gelinas said.

Home care in Ontario is managed by community care access centres, which are funded by the Ministry of Health and Long-Term Care. Those centres contract for-profit nursing agencies to provide home care - care they are not legally allowed to refuse, said Gelinas, the provincial NDP health critic.

"Not every home care patient is a cute little grandmother waiting for you with hot cookies...out of the oven," Gelinas said.

"Some of them are demanding. Some of them are more difficult, but they're still in need of care."

The North East Community Care Access Centre, which covers the Sudbury region and beyond, was not able to discuss Mettinen-Kekalainen's situation.

"Privacy laws would prohibit us from speaking to any specific case," said Kim Morris, the centre's communications director.

Gelinas is hoping to meet with the centre on Monday, and after she gets Mettinen-Kekalainen to sign a consent form they will be allowed to discuss the case with Gelinas and share confidential information.

Gelinas said the centre is trying to find another agency or nurse who is up to the job.

She hopes for a speedy resolution so Mettinen-Kekalainen can live out her life in dignity, but Gelinas said Mettinen-Kekalainen's plight is symptomatic of a broken system.

Former Progressive Conservative premier Mike Harris brought in competitive bidding for home care in the 1990s in an effort to reduce the cost for taxpayers, Gelinas said.

Before, the Victorian Order of Nurses and other charitable organizations had government funding and provided excellent home care, Gelinas said. Now, the for-profit companies Gelinas is aware of pay low wages, no benefits and no pension plans, which does not attract top quality nurses, she said.

"Our home care system is broken," Gelinas said. "And why is it broken? Because of the bidding system. This is not the way to provide care."

Complaints about individual nurses refusing care are the jurisdiction of the College of Nurses of Ontario, but if entire agencies refuse care that would fall under the province's Ministry of Health, said a spokesman for the nurses' college.

A spokesman for Health Minister David Caplan said the minister can't comment on the specifics of the case, but that he is confident the issue can be resolved locally.

-With files from the Sudbury Star