Opinion: A dog would get better treatment than Minna Mettinen-Kekalainen


I am sick with shame as I leave Minna's home. That in My Sudbury, My Ontario, there is no help for a woman like Minna Mettinen-Kekalainen, no matter how difficult she can be to deal with.

Posted By Carol Mulligan/The Sudbury Star



Anger burns my stomach as I drive along Regent Street back to The Sudbury Star after spending an hour with Minna Mettinen-Kekalainen.

Anger and I are no strangers. It overcomes me at times for no reason and out of all proportion. But this is different. This is righteous anger. I am determined to make it work for something good.

A few minutes after 10 a.m., I visit Minna's home as promised, following wheelchair tracks in the freshly fallen snow to her front door.

Reluctant to enter, I knock loudly, open the door, then step in, yelling her name. When she does not answer, I hesitate, then remember the disease that is crippling her body is now claiming her voice so I can't hear her call to come in.

Minna suffers from amyotropic lateral sclerosis or ALS. Once a proud athlete and adaptive rower, Minna sits in her wheelchair, breathing oxygen from a hose, fighting exhaustion to keep her eyes open so she can talk with me.

Minna and I have met once before during an interview about her battle with the North East Community Care Access Centre to receive home nursing and personal care such as bathing and diaper changing.

Minna and her friends have been scathing in their attacks on an organization I believe does what it can to help as many people as it can with the resources it has. It has been difficult to figure out the true story.

But the fact is this. Almost two weeks after The Sudbury Star first wrote about her, nothing has changed for Minna Mettinen-Kekalainen.

She still has Lou Gehrig's disease and is deemed a palliative patient by her family doctor.

She still has not received any nursing care or personal support from the CCAC since a private nursing agency contracted to care for her refused to treat her after she threatened to report its nurses for not following her doctor's orders.

In the last week or so, a speech therapist and a dietitian have visited her. I cannot figure out why. Minna is being fed through a gastric feeding tube inserted into her stomach, although she was refusing her liquid supplement for days in a hunger strike to protest against her treatment.

Speech therapy may be helpful, but what Minna needs is a bath and to have her diaper changed. She admits there have been attempts to get a personal support worker to her home, but no one has arrived yet. It has been weeks since she was bathed and had her diaper changed, and says she has a rash the size of a dinner plate on her bottom.

She cries when she points to the clutter in her bedroom, and says the rest of her place has become a giant storage locker. We cry a lot together during that hour.



Minna is concerned about her friend and power of attorney Jason Bushie, a young man she only met 18 months ago but on whose shoulders rests the sole burden for her care.

Minna is afraid Jason is going to burn out as he juggles his banking job and she weeps about the unfairness of her care falling on her younger friend's shoulders.

She is heartbroken after speaking with her 16-year-old daughter last night in British Columbia via computer. The girl was sent to live with relatives after Christmas and is lonely and wants to come home. Her mother is torn between missing her and regret that she didn't send her daughter to live with relatives sooner. Maybe it would have spared her the trauma of watching her mother deteriorate before her eyes.

The conversation continues from one tearful subject to another as Minna unloads her frustration and sadness. A Buddhist, Minna wonders what she has done in another life to deserve to be treated so badly. The thought is shared without self-pity, but rather in puzzlement that it had come to this.

The founder of Sudbury's adaptive rowing program, Minna said people in the rowing community were proud to stand beside her when she collected medals and garnered other honours for her achievements. None is around to help her today.

Minna has also been a model for parents of autistic children in Sudbury. She has asperger syndrome, an autism spectrum disorder that she has fought her whole life to overcome.

When reminded how she has inspired people dealing with challenges, Minna lowers and turns her head aside. She cries and whispers she no longer wants to inspire anyone. She just wants help.

The North East CCAC says it cannot speak about her case because of confidentiality requirements. Sudbury MPP Rick Bartolucci has been approached and asked for help. I admire Bartolucci a great deal and recall the dozens of times he was outraged, while in Opposition, at stories like Minna's. I dearly wish to see some of that outrage now.

I want to pick up the phone and invite North East CCAC executive director Richard Joly to come with me to visit Minna. To look in her sad face and tell me how in God's name a woman in her condition could pose a threat to anyone.

I want to phone Rick Bartolucci and urge him to come with me to Minna's home. To pad in his sock feet as I did through the wet wheelchair tracks to her bedroom where she sits alone, in a dirty diaper, reaching out for help via the laptop computer mounted on her wheelchair.

I know these men, both Richard and Rick, and know them to be kind-hearted. I believe if they got out from behind their desks and met Minna, this situation could be resolved.

To help stem her tears, I urge Minna to focus on something positive for the next day. Just for the next day.

She brightens when she remembers that social work students at Laurentian University are planning a protest Friday to draw attention to her situation.

Imagine that, she says. Young people whom she has never met going to those lengths for her. She cries that total strangers are doing something for her that dozens of people she has helped and inspired in the rowing and autistic communities did not or could not.

ALS is eating away at Minna Mettinen-Kekalainen's body, but it would not surprise me if she died of a broken heart. As I lace up my boots and leave her home, I cannot imagine leaving a sick dog alone in conditions like those in which I am leaving Minna. If she were an animal, I could call animal welfare authorities to rescue her. It's not that easy to find help for a desperately ill woman.

I am sick with shame as I leave Minna's home. That in My Sudbury, My Ontario, there is no help for a woman like Minna Mettinen-Kekalainen, no matter how difficult she can be to deal with. If someone would just take the time to sit with her and see this from her perspective.

All I can do is come back and write about Minna.

This is Minna's story, but it is happening in our Sudbury.

Our hearts should be breaking, too.

cmulligan@thesudburystar.com

Article ID# 1400424

http://www.thesudburystar.com:80/Art...aspx?e=1400424

That is truely heartbreaking.

Minna Mettinen-Kekalainen makes YouTube video to chronicle plight (comment on this story)

http://www.thesudburystar.com/Articl...=1398624&auth=

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

How shocking and sad

How can we help this woman?

The fact that she has a condition on the autism spectrum (the same as my own son) should be irrelevant to the carers and nurses as difficult as some behaviours might be to understand. They should be professional and knowledgeable.

Where the heck is this happening? Canada. Heck, I bet it happens everywhere. How shocking. I'm an old nurse. Heck, I'd go help her if I could. Surely there is someone who could help her with the practical day to day planning with bathing and feeding etc. I'm absolutely horrified.

http://reunifygally.wordpress.com/20...21/save-minna/

I decided to read more about what's happening to this woman and I've done that and now I've just sent emails to numerous people listed on the site above. It may not help... I hope it does. My one little voice from way over in Australia may never be heard (read), however, there are some situations where I can't just leave it for the rest of the world to sort out.