First Published Thursday, 22 January 2009
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:
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.
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
Sudbury Star after spending an hour with Minna Mettinen-Kekalainen.
and out of all proportion. But this is different. This is righteous
anger. I am determined to make it work for something good.
following wheelchair tracks in the freshly fallen snow to her front door.
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.
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.
with the North East Community Care Access Centre to receive home
nursing and personal care such as bathing and diaper changing.
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.
wrote about her, nothing has changed for Minna Mettinen-Kekalainen.
by her family doctor.
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.
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.
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.
rest of her place has become a giant storage locker. We cry a lot
together during that hour.
Bushie, a young man she only met 18 months ago but on whose shoulders
rests the sole burden for her care.
job and she weeps about the unfairness of her care falling on her
younger friend’s shoulders.
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.
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.
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.
Sudbury. She has asperger syndrome, an autism spectrum disorder that
she has fought her whole life to overcome.
Minna lowers and turns her head aside. She cries and whispers she no
longer wants to inspire anyone. She just wants help.
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.
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.
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.
kind-hearted. I believe if they got out from behind their desks and
met Minna, this situation could be resolved.
for the next day. Just for the next day.
Laurentian University are planning a protest Friday to draw attention
to her situation.
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.
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.
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.
immediate action to resolve the case of a Sudbury woman suffering
from ALS who says she is being denied home care.
draw attention to the story of a woman they say has fallen through
the cracks of a health-care system that is broken.
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.
said Murray, speaking through a megaphone in front of Sudbury MPP
Rick Bartolucci’s constituency office just before noon.
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.
that this situation is completely unacceptable, ” said Murray.
done everything it can to help the ailing woman, to keep working on
Mettinen- Kekalainen’s behalf.
one of your constituents is in need and she needs you now more than ever.”
she threatened to report nurses who were caring for her to the
Ontario College of Nurses for not following her doctor’s order.
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.
harassment or abuse when they visit clients’ homes.
withheld from someone who needs them.”
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.
spectrum disorder that can affect interpersonal communications. Some
of her friends have speculated the disorder can make her appear
difficult to deal with.
thought it “simply deplorable” that someone could be denied care when
they need it.
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.
“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.”
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.”
Leave a Reply