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First Published Thursday, 22 January 2009

ALS patient on hunger strike over home care

Posted By CAROL MULLIGAN, THE SUDBURY STAR


A desperately ill Sudbury woman heralded as a champion —
athletically and of human rights — is entering the sixth day of a
fast to end her suffering and her life.


Minna Mettinen- Kekalainen, 42, has fought for years to keep
amyotrophic lateral sclerosis (ALS) from preventing her from doing
the things she loves — skydiving, rowing and raising two children.


But she no longer has it in her to fight a provincial organization
she says is refusing to help her when she is at her weakest.


Mettinen-Kekalainen is alone, bedridden or confined to a wheelchair,
unable to change her adult diapers or bathe herself, and in constant pain.


Her only source of nutrition is the feeding tube in her stomach, but
she is refusing to let friends administer the four cans of supplement
she should be receiving daily.


Once the subject of newspaper articles about her indomitable spirit
in coping with ALS and a role model for people raising autistic
children, Mettinen-Kekalainen (who also suffers from Asperger
Syndrome, an autism spectrum disorder) is not receiving home care.


She says it’s being denied by the North East Community Care Access
Centre because she complained about nurses contracted by the
organization whom she claimed were not following her doctor’s orders.


The centre is unable to comment on Mettinen-Kekalainen ‘s case
specifically, but maintains it doesn’t deny care to anyone who needs
it — provided the home environment in which it is offered is “safe.”
Safe, said executive director Richard Joly, includes being free from
harassment and abuse.


Mettinen-Kekalainen told The Sudbury Star last week she threatened to
report the nurses to the Ontario College of Nurses because they were
not giving her the care her doctor ordered.


She and friend Jason Bushie say the nursing agency and the Community
Care Access Centre have deemed that harassing behaviour.


The truth in the dispute may never be known. What is evident is that
Mettinen-Kekalainen seems destined to spend her last days in living
conditions that would be considered unfit if a dog were subjected to them.


Bushie said his friend, whom he met 18 months ago at the Sudbury
Rowing Club, just wants to die. He said she has been promised nursing
care, but is being told there are no nurses to provide it.


She hasn’t had a bath in months, her diapers go unchanged for weeks
and “Minna’s just given up,” said Bushie. “She’s hit her wall.”


Among her many problems is that Mettinen-Kekalainen dearly misses her
children.


Her son, 18, left home because he couldn’t cope with her illness. And
earlier this month, Mettinen- Kekalainen sent her 16-year-old
daughter to live with relatives in Vancouver because she was afraid
the child would get up one morning and find her dead.


Bushie said he’s shocked at how his friend’s health has declined in
the last month or so. He’s even more surprised that news stories
about Mettinen-Kekalainen ‘s condition a week ago have not resulted in
her receiving help.


“This goes beyond disgusting,” Bushie said. “We send peacekeepers to
other countries to help people living in conditions like hers.”


Nickel Belt MPP France Gelinas calls Mettinen-Kekalainen ‘s story
“heart-wrenching. “


She listened to it online at
<http://ca.youtube. com>http://ca.youtube. com
/user/SudburyCCACex posed, where Mettinen- Kekalainen is chronicling
her fight with the centre and her last days in video.

Gelinas, the NDP’s health critic, said judging from those videos,
Mettinen-Kekalainen “is a person of integrity. She’s very strong and
courageous.”


She is also someone who needs home care and should be receiving it.


“Our home care system is broken,” said Gelinas. “It needs to be fixed.”


She blames for-profit nursing agencies contracted by North East
Community Care Access Centre for siphoning money from client care to
their bottom lines.


“As long as we have competitive bidding that puts profit ahead of
people’s needs, we’re going to have a broken system,” Gelinas said.


Bob Fera, former chair of the Manitoulin-Sudbury Community Care
Access Centre, fought the province for years over funding cuts to
home care services.


Now retired, Fera was contacted in Florida where he is spending the
winter. If Mettinen-Kekalainen is being denied care because the
centre can’t find nurses to tend to her, “that’s not acceptable,” said Fera.


And just because a client is difficult shouldn’t affect whether they
receive care.


“You treat the need, not the person,” said Fera.


Hard-to-service clients such as Mettinen-Kekalainen are becoming
“more the rule than the exception,” he said. If they were in
hospital, they would be cared for regardless of how difficult they were.


But Joly maintains there are limits in hospitals and long-term care
residences to the harassment and abuse to which employees are subjected.


“We are letting them die,” said Fera of hard-to-service clients.


“For many of them, if they don’t have family, they’re dead.”


Mettinen-Kekalainen has contacted the Sudbury MPP Rick Bartolucci’s
office, looking for help. When contacted Friday, an aide to
Bartolucci said he was not available and suggested calling the media
line for the Ministry of Health and Long-Term Care for comment.


A Health ministry media spokesman said he could do no more than
provide information on how much money Dalton McGuinty’s Liberal
government invests in home care in the northeast. That information
had not arrived by the end of business Friday.


Mettinen-Kekalainen told The Star last week her last hope was gaining
admission to Maison Vale Inco Hospice, where she could spend her
remaining days in comfort.


In an e-mail to The Star on Friday, Mettinen-Kekalainen said her
request has been rejected because there is no telling how long she
will live, despite her condition. Most people admitted to the hospice
die within 10 days, and she could live for months.


Mettinen-Kekalainen said she expects it will take three weeks to die
of starvation.


“I need to go and get some peace,” she said in the e-mail. “I am
continuing my hunger strike until I receive that peace.”


(If you have a comment on Minna Mettinen- Kekalainen’s situation,
e-mail cmulligan@
Article ID# 1392830


A Call To Assist Wherever Possible In Minna’s Case:


“I have a request for anyone with any power to do anything about this:


Don’t get bogged down in how sad you feel about what is happening. Don’t — if you can do anything more — just write about this. Don’t treat her death as the only inevitable conclusion in all this. Find a way to pressure the right people until Minna gets her services back, free of abuse/neglect and free of coercion to avoid reporting abuse/neglect.”

http://ballastexistenz.autistics.org/?p=572


“No one deserves to live and to spend their final days in this manner.  Those within the ‘caring’ professions whose job it is to ensure that those in need and at their most vulnerable are granted appropriate, professional and dignified care should perhaps review why they entered their profession in the first place.  They should surely be held accountable.  This is a most upsetting case, and sadly yet another example of how ‘not’ to conduct a caring, professional agency.  This is not a time for sitting back and accepting the way things are.  It’s a time to highlight gross inadequacies.  Time for change.  Minna’s life meant and continues to mean a great deal.  It should not end in this manner. Action in Canada must be taken to put things right and to ensure a higher regard for human life than is currently shown.”  Julie


Updates


Fwd:


Steve Murray, spokesperson for this rally communicated with Carol
Mulligan at the Sudbury Star (the reporter that
has been following Minna’s Story). Carol has confirmed that Minna has
started eating again. While this is good news it does not end our
fight to help reinstate care. We will continue with the protest on
Friday as Minna is excited that we are working on this cause!!


http://www.facebook .com/group. php?gid=50628557 006&ref=mf


Protest For Minna


Fwd:


We Are Protesting:


FRIDAY JANUARY 23rd from 8AM until NOON in front of MPP Rick
Bartolucci’s office located at 93 Ceder st, corner of Ceder and
Lisker, the Canada-Broker Building.
Then at NOON we are Marching to the Community Care Access Centre
which is located in the Rainbow Centre 40 Elm St, Suite 41-C the
north east corner of the mall at the corner of ST Anne Rd and Notre Dame Ave.


For Further and Updated Information:


Facebook Group: Minna’s Hunger Strike – Call to action for an ALS
patient denied care http://www.facebook .com/group. php?gid=50628557 006&ref=mf
The Sudbury Star:
<http://www.thesudbu rystar.com/ PrintArticle. aspx?e=1392830>http://www.thesudbu rystar.com/ PrintArticle. aspx?e=1392830
Youtube:
<http://ca.youtube. com/user/ SudburyCCACexpos ed>http://ca.youtube. com/user/ SudburyCCACexpos ed


Thursday January 22nd – 9:38 a.m.


Community to protest patient’s plight
ALS patient Minna Mettinen-Kekalainen has been denied home care

Posted By CAROL MULLIGAN, THE SUDBURY STAR


Laurentian University social work students will stage a day-long protest Friday to keep attention focused on the plight of a Sudbury woman with ALS who says she is being denied home-care services she desperately needs.


The students will demonstrate in front of Sudbury MPP Rick Bartolucci’s office from 8 a. m. to noon, then march to the North East Community Care Access Centre in the Rainbow Centre for a demonstration until 4 p. m. to raise awareness about the case of Minna Mettinen- Kekalainen.


Mettinen-Kekalainen, 42, began a hunger strike last week — refusing to accept liquid supplements through the gastric feeding tube inserted in her stomach — to garner publicity for her battle with the access centre.


Mettinen-Kekalainen, who has been recognized for starting the adaptive rowing program at the Sudbury Rowing Club, claims she is being denied home care, such as nursing and personal support, because she threatened to report nurses she said weren’t following her doctor’s orders to the Ontario College of Nurses.


The access centre has said it cannot comment on Mettinen- Kekalainen’s case because of privacy laws, but executive director Richard Joly said the organization has a duty to protect its workers and does not send them into environments where they may face harassment or abuse.


* Follow on YouTube at ca. youtube.com/user/SudburyCC


ACexposed Steve Murray, a third-year social work student, said Wednesday he and two classmates were absolutely outraged by Sudbury Star stories outlining Mettinen- Kekalainen’s difficulties with the access centre.

Mettinen-Kekalainen, herself a Laurentian social work graduate, is chronicling her story in a video diary on YouTube at http://ca.youtube.com/user /SudburyCCACexposed.

Mettinen-Kekalainen’s story “hit home,” Murray said, because she is a Laurentian alumnus and because “this could happen to anybody.”

The students are determined to keep public attention on Mettinen- Kekalainen’s situation and the huge injustice that is being done to her.

Murray said there have to be other ways to resolve a disagreement such as this one than withholding services from a person who needs them.

Students want both Bartolucci, who has been contacted about Mettinen- Kekalainen’s case, and the access centre to know that people think the woman is being treated inappropriately and that “there are better ways to deal with” her.

“This is not going to be swept under the rug,” said Murray.

A friend of Mettinen- Kekalainen, who is also her legal power of attorney, said she has begun accepting her food supplement again, ending her hunger strike.

Jason Bushie said Mettinen- Kekalainen has also experienced a positive mood swing in the last few days. She has been deemed a palliative patient by her family physician, but that is not stopping her from getting out, in her motorized wheelchair and via Handi-Transit, for outings such as one she took to a Sudbury bookstore Wednesday.

Bushie said Mettinen- Kekalainen still is not receiving personal support or nursing care from the access centre, although there have been attempts to try to set up appointments. Her voice has been so affected by ALS, also known as Lou Gehrig’s disease, that she can no longer use the telephone and must rely on e-mail for communication. That is making it more difficult to set up appointments for treatment.

Bushie said last week the access centre told him it does not have nurses available to care for his friend, since the nursing agency that complained about Mettinen- Kekalainen refused to treat her.

Mettinen-Kekalainen suffers from asperger syndrome, an autism spectrum disorder characterized by autistic-like behaviour and deficiencies in social and communication skills.

Murray said social work students hope their protest will get more people in the community talking about Mettinen-Kekalainen’s situation. They also hope it will cause the access centre to reconsider its position on her care and prompt Bartolucci to get more active in her case.

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

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.


Denying care ‘unacceptable: ‘ students
Posted By CAROL MULLIGAN, THE SUDBURY STAR

Social work students from Laurentian University are demanding
immediate action to resolve the case of a Sudbury woman suffering
from ALS who says she is being denied home care.

About a dozen students staged a day-long protest downtown Friday to
draw attention to the story of a woman they say has fallen through
the cracks of a health-care system that is broken.

They admitted they don’t have all the facts in the dispute between
Minna Mettinen- Kekalainen and the North East Community Care Access
Centre, and protest leader Steve Murray said he recognized the agency
couldn’t speak about the case because of confidentiality laws.

“We are not here to make anyone or any agency seem like a bad guy,”
said Murray, speaking through a megaphone in front of Sudbury MPP
Rick Bartolucci’s constituency office just before noon.

“But we are here to ensure that this issue does not get swept under the rug.”

Murray said the purpose of their demonstration was twofold — to get
Mettinen- Kekalainen the services she needs and isn’t receiving, and
to call for collaboration to find out what happened in this case and
to ensure it never happens again.

“Our message to both the government and the agencies involved here is
that this situation is completely unacceptable, ” said Murray.

He appealed to Bartolucci, who has said his constituency staff has
done everything it can to help the ailing woman, to keep working on
Mettinen- Kekalainen’s behalf.

“Our message to you, Mr. Bartolucci, our representative, (is that)
one of your constituents is in need and she needs you now more than ever.”

Mettinen-Kekalainen is claiming she is being denied home care after
she threatened to report nurses who were caring for her to the
Ontario College of Nurses for not following her doctor’s order.

The care access centre cannot comment on her case, but has said there
is more to it than is being reported. Executive director Richard Joly
said Friday his organization never withdraws services from clients
without presenting them with other options.

Joly has also said the agency cannot expose its workers to threats of
harassment or abuse when they visit clients’ homes.

Murray said Canadians won’t sit back “while essential services are
withheld from someone who needs them.”

The students decided to protest on Mettinen- Kekalainen’s behalf
after reading Sudbury Star stories outlining the woman’s situation.
Mettinen-Kekalainen , a former student in the same social work
program, attended the rally at one point in her motorized wheelchair,
and her presence bolstered marchers’ morale.

Mettinen-Kekalainen also suffers from asperger syndrome, an autism
spectrum disorder that can affect interpersonal communications. Some
of her friends have speculated the disorder can make her appear
difficult to deal with.

Student Miranda Maunsell said she joined the protest because she
thought it “simply deplorable” that someone could be denied care when
they need it.

She, too, acknowledged there is more to the story than she knows.

“But people that are in jail and (have) committed murders … still
have the right to be treated. I don’t think it matters what you’ve
done. Everyone has the right to have their basic needs met.” Neither
Bartolucci nor access centre officials met with protesters, but
student Robin Cheslock slipped up the elevator to visit Bartolucci in
his constituency office.

Cheslock said the MPP reiterated his position that his staff has done
“anything and everything they can to advocate on behalf of Minna.
However, his office can’t interfere on individual cases such as this.
He has to let the process run its course.”

Cheslock said Bartolucci said he supported students’ right to protest
and “encouraged us to continue on with what we’re doing and voice our
opinion and advocate for people in situations such as this, and to
carry that drive and desire further, not just through graduation, but
later on in our careers.”

Sudbury, Ont., woman whose home care was discontinued will be treated again

The Canadian Press

SUDBURY, Ont. — A woman in Sudbury, Ont., suffering from Lou Gehrig’s disease who has been without home care for more than two months will soon receive the treatment she needs.

Advocates say Minna Mettinen-Kekalainen was refused home care by the three nursing agencies in the area.

She also has Asperger syndrome, an autism spectrum disorder, which friends say can make her difficult to deal with.

Provincial NDP health critic France Gelinas stepped in to act on Mettinen-Kekalainen’s behalf and says the Sudbury region community care access centre has found a solution.

She says they reached an agreement with one of the agencies that had been refusing care, and that Mettinen-Kekalainen accepted the arrangements.

Gelinas says Mettinen-Kekalainen, who needs her adult diaper and feeding tube changed and needs to be bathed, will receive home care again starting Feb. 2.



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