Woman Losing Her Battle With Deadly Disease
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A Sudbury woman who has long been an inspiration to athletes and to people battling disabilities is in the end stage of life, fighting to get the care she needs to live her last days in comfort and with dignity.

For more than three years, Minna Mettinen- Kekalainen, 42, has been determined to keep amyotrophic lateral sclerosis -- or ALS -- from ravaging her body.

She has come to accept that her health is failing her, and now the former athlete wants nothing more than the assistance she needs to live in her own home as long as she can.

But she wants it on her own terms.

Since Nov. 17, when she had a gastric feeding tube inserted in her stomach, the wheelchair-bound former social worker has been without home nursing or personal support care, except that provided by a close friend or two.

She hasn't been bathed since mid-November, has often not received the three-times- a-day medication or four-times-daily liquid supplement she needs to survive.

On Tuesday, her family doctor paid her a home visit and changed her adult diaper -- the first time that had been done since Nov. 17.

Since mid-November, Mettinen- Kekalainen has been mired in a dispute with the North East Community Care Access Centre over her home care.

She and friend Jason Bushie, who visits her daily and provides virtually all the assistance she is receiving now, have compiled a binder of documents outlining her complaints with the home care system.

Those complaints boil down to this.

Nurses hired from a private agency by the CCAC to care for Mettinen-Kekalainen refused to care for her after she threatened to report them to the Ontario College of Nurses for not following her doctor's orders.

The CCAC put her on a waiting list for another nursing agency and in the meantime required her to sign a conflict resolution agreement promising not to "threaten or harass" health-care workers assigned to her in the future.

Mettinen-Kekalainen refused, insisting it was her right to complain to the CCAC or anyone else if she did not think the care she was receiving was adequate.

Bushie charges that the CCAC did not investigate his friend's complaints that home nurses were not giving her daily baths, delivering proper oral care or feeding her the four cans of liquid supplement ordered by her family physician.

Instead, he says the agency suspended her care until this week when threats to take Mettinen-Kekalainen's story to the media prompted the CCAC to begin reinstating care.

After a lifetime of helping others -- raising two children, working as a social worker, starting the adaptive rowing program at the Sudbury Rowing Club -- Mettinen- Kekalainen is ready to do what it takes to get the help she needs.

If that includes ruffling a few feathers, she is prepared to do it. But it hasn't been without a cost.

Bushie says his friend would be dead if he hadn't been there the last two months to help with her daily needs. A banker by occupation, Bushie visits Mettinen- Kekalainen's home every night to administer her medications, feed her through her feeding tube, change her bedding and tidy her residence.

But he doesn't have the medical skills to properly clean the wound site around her feeding tube to keep it from getting infected or provide the oral care so important to keep ALS patients, who have difficulty swallowing, from developing bacteria that can move into their lungs and settle as pneumonia.

Bushie says he understands that nurses might have felt threatened when Mettinen- Kekalainen vowed to report them for not fulfilling their duties.

The end result has been a stalemate between the CCAC and Mettinen-Kekalainen, with her not receiving the help she needs to survive at home.

He says he worries about the many seniors in Sudbury who rely on home care and cannot fight the system like his friend can -- "they don't know how to fight."

Mettinen-Kekalainen has heard about Maison Vale Inco Hospice and longs for the quiet, comfortable care it offers people at the end of their lives.

Bushie says the CCAC dropped the ball again on getting his friend admitted to the hospice. But he and his friend still hope that remains an option for her.

Frankie Vitone is senior director of client services for the North East CCAC.

Because of confidentiality regulations, Vitone could not speak specifically about Mettinen- Kekalainen's case.

Vitone did say that, in some situations, detailed agreements are required with clients to clarify the rules "and outline limitations of what can be provided." That is especially the case after complaints about a client's behaviour.

The CCAC does have an established complaints process for both care providers and clients, said Vitone, and strategies are worked out to help deal with problems that arise.

"We make every effort to provide service when (people are) eligible for service," said Vitone, and the CCAC works quickly to resolve disputes so service to clients is not interrupted.

Often it helps to clarify in writing the "roles and responsibilities" of both client and the CCAC to make a home-care arrangement work, she said.

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