Mothers work to start local chapter of National Alliance on Mental Illness
STEAMBOAT SPRINGS — Their stories are different.
Kathy Coates’ son started exhibiting signs of problem behavior when he was four years old. He was charming while unruly and wild — far beyond typical rambunctiousness.
Tricia McEntee’s son was a smart, gentle, big-hearted kid, living a normal life and thriving as a college senior — until his psychotic break at age 21.
The diagnoses were different, and the two moms spent most of their motherhoods in different states facing unique challenges and finding their own ways of coping.
But when Coates found McEntee, both now living in Steamboat Springs, she was thrilled to find someone else who understood — who shared the painful and devastating bond of being the mother to a son suffering from mental illness.
Now, the two women want to bring more resources to people with mental illness and their loved ones — specifically in the form of a local National Alliance on Mental Illness, or NAMI, chapter. As the nation’s largest grassroots mental health organization, NAMI provides advocacy, education, support and public awareness.
Coates and McEntee are starting out with a public meeting to gauge interest on Wednesday, Feb. 26, to at 5:30 p.m. at the Bud Werner Memorial Library.
Living respectively in Nebraska and Utah, Coates and McEntee attended NAMI Family-to-Family classes and support groups and found them — while emotionally exhausting — to provide a sense of solidarity.
The need here is regional, they said, with the closest class or group Coates was able to find in Frisco, or Denver.
The classes were also educational, providing information on neuroscience, medications, diagnoses and combatting stigma.
Both women’s sons are now in their mid-30’s, living precarious and unpredictable lives on the edge of homelessness.
Neither has committed offenses that would land them in an institution, but neither has been able to get the help it takes for a stable existence.
Both mothers tried everything in their power to help their boys — including accessing every available resource — only to find time and again a broken mental health care system and no easy answers.
What: Interest Meeting on forming local National Alliance on Mental Illness (NAMI) chapter
When: 5:30 to 6:30 p.m. Wednesday, Feb. 26
Where: Bud Werner Memorial Library, first floor project room
When McEntee lived in California and sought out help from various organizations, the only advice she got was to leave her son alone in town for a month or as long as it took to get him picked up and put on a list of homeless people.
They’ve both been advised if they end up in the emergency room with their sons, to lie and say their son threatened to harm them. That way, they can access a higher level of care.
The mothers live with endless frustration, heartbreak and helplessness, and have for long enough to know the only people who can truly relate are those who have been through it.
At first, Coates said, you try to find a quick fix or a problem-solving magic pill. Then, said McEntee, you try to figure out “how do I live with it?”
For the first 10 years, McEntee said she didn’t know how to live with it. She didn’t practice self-care and didn’t allow herself to feel happy. Now, she is finally at a place where she knows having a son with mental illness is a huge part of her life but doesn’t have to be her whole life.
For now, Coates has regular communication with her son who lives in Nebraska.
McEntee hasn’t seen her son for several years. She’s hired a private investigator and reaches out to local agencies when she can locate him.
Sometimes, the only way she can track her son is through arrest records — if she knows what country he is in.
When she has been able to get her son into a hospital, McEntee said she feels like it only pushed him further away and made him angrier with his family.
She wishes for the problems of the past. “I would love to have him back living with me smoking and drinking too much,” McEntee said.
For many years, they hoped their sons could “beat it back.” They are both intelligent, talented men with many positive attributes, they explained. But they are sick — and they don’t get treated with the care and concern as they would with a physical illness, like cancer. And it isn’t going away.
What you need, said Coates, and what the classes help with, is making a plan for when terrible and terrifying things happen.
Just answering the phone on a daily basis is a nerve wracking experience, said Coates.
As parents, the things that they’ve dealt with “are things you never would have thought you’d do,” McEntee said.
The two women have been invited by NAMI to a training in April in Denver and are looking for a few other people to form the five-member board required for a northwest Colorado NAMI chapter.
“I wholeheartedly believe there is a need here,” said McEntee. “I know people have loved ones with mental illness.”
Starting a group isn’t easy for either mom, especially McEntee. Because of all the pain it stirs up, “I’m hesitant,” she said through tears. “I’m struggling.”
But both are compelled, and because they know they will live with this challenge for the rest of their lives, they know how important it is to find other people with whom to connect.
McEntee also knows if she can stay strong, she can better help her son — if he ever calls her up and asks for help.
They both also know all too well how broken the system of mental health care is, especially for men like their sons.
Spending time with McEntee, Coates said, helps her tremendously when she needs someone to talk to about what is happening with her son. While connecting to others will undoubtedly involve shared misery and tears, the point is they aren’t alone.
NAMI also supports peer-to-peer groups for people with mental illness — something the mothers wish their sons could connect to — and something they would love to see develop locally.
“If we think we feel alone,” McEntee said, “think about how they feel.”
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