Family creates support group that addresses mental illness

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— More than a year and a half later, Oak Creek residents Jenny and Charles Lorch easily recall the awfulness that followed their daughter's diagnosis of mental illness.

They refer to the Missouri hospital where she first stayed as "medieval," remember the frustration of not knowing what was wrong or how to help and relive the hours they spent at a Denver hospital, the closest place for mentally ill patients to stay.

"The family members suffer quite a bit, too," Charles said.

Having a loved one with mental illness can be tougher than tough. It mixes uncertainty, stigma and guilt.

When the Lorches' daughter was first hospitalized in Missouri, her family didn't know anything about mental illness. After traveling hundreds of miles to visit her, they had to wait three days before they could see her. And for two weeks, they stayed in Missouri knowing they could visit her for only 15 minutes a day.

The trip was followed by an all-night drive back to Colorado, a 911 call to the local hospital and a day of waiting before a bed became available in a mental hospital in Denver. It was much longer until doctors were finally able, largely through trial-and-error use of different medications, to pinpoint her illness as schizophrenia.

"It is pretty frustrating," Charles said. "We were so dumbstruck with the condition that she was in. It would have been helpful at the facility for them to say, 'Here is a group you can go to,' because you don't know what is going on."

It was the first time the Lorches would wish for a support group. One was available in Denver, while their daughter was in the hospital there, and another was available two hours away in Grand Junction, but nothing was available locally.

Adding to the feeling of isolation was the fact the family had lived in Oak Creek for only a few years when Jenny was diagnosed. Perhaps, said Jenny, if they had lived in the community longer, they could have found other families dealing with mental illness.

"It was like, 'Does anybody else in the world have this illness?'" Jenny said. "We couldn't find it. We were new to Steamboat. It made it difficult for us."

She soon realized, however, they were not alone.

"Everybody I have talked to about my daughter's mental illness has said they know someone in their family or close to them with mental illness," Jenny said. "It is very surprising. It makes you feel that people understand about it and know more about it than you think. You are not out there alone in the world."

Jenny figured that if everyone knew of someone with mental illness, then there had to be people in Routt County in need of a support group. And so, this December, Jenny and Charles started one.

Although the symptoms and effects of mental illness vary among patients, they impact loved ones similarly. The local group is a place to be around others who are experiencing the same feelings and dealing with the same issues. It gives people a chance to share resources and knowledge, and do so in a place without the burden of the stigma that surrounds mental illness, Steamboat Mental Health Director Tom Gangel said.

"The stigma is there," Charles said. "But it doesn't help to stick your head in the sand."

Apparently, other local residents are realizing that. At the support group's first meetings in December, it drew three or four people, but at last Wednesday's meeting, Gangel counted at least 15.

"When you tell someone, 'My husband has cancer,' they say, 'Oh my gosh, that is too bad,'" Gangel said. "When you tell someone, 'My husband is schizophrenic,' they think that guy is weird."

Psychiatric Nurse Practitioner Margy Bookman agreed a support group can be valuable, in part because it is a safe haven away from that stigma.

"Family members tend to feel isolated and alone and different," Bookman said. "A support group really kind of normalizes and helps deal with feelings of isolation and being alone."

Mental illness runs in Jenny's family and the couple knows the stigma still exists. They know some people minimize mental illness -- attribute it to being raised wrong or just not being able to pull oneself up by the bootstraps -- or think it is something brought upon oneself. The Lorches know some do not understand mental illness can be a sickness as devastating and unpreventable as cancer.

"It is like diabetes," Jenny said. "You have to take your medicine or you won't live, and it doesn't go away."

That understanding is one that came over the Lorches' long, personal, and often lonely, voyage with their daughter's illness.

"Our daughter has a mental illness. She has been struggling with it for the last eight years," is how Jenny begins the story.

When the Lorches' daughter was first hospitalized, she was a 28-year-old college graduate who was living in Missouri. Looking back, they can see their daughter had suffered from the mental illness for years. She had depression and, through her phone calls, they new something was wrong.

One night, she went to the hospital emergency room and asked for sleeping pills to help her sleep.

"The staff took one look at her and took her to the nearest mental hospital," Jenny said.

The parents were already on their way to Missouri. Once at the hospital, they discovered the legal power of a patient's rights; they were unable to either visit their daughter without her permission or to get information from her doctors.

They had to settle for seeing their daughter 15 minutes a day.

Two weeks later, she was released. Worried their daughter might try to escape from a hotel room, Jenny and Charles drove her straight through the night from Missouri to Colorado.

But it was during the months while their daughter was admitted to a Denver hospital and then brought home that Jenny and Charles said a support group would have been most helpful.

"When we came here and she was hospitalized in Denver, we were looking for doctors, and what we would do with her when she got home, and what to expect," Jenny said.

That is exactly the information a local support group can provide, Gangel said. It is a chance for family members to share their experiences with local doctors, the side effects of certain drugs and how to deal with finances.

Sure, Jenny said, chat rooms and information can be found on the Internet, but a cyberforum does not have the local knowledge or backing of a support group.

Because Steamboat is so far away from the Denver hospitals, local families often choose to bring home and care for mentally ill patients who, if they lived in a metro area, would still be hospitalized. The support group can provide a chance for sharing the responsibilities of looking after the mentally ill at home.

"You need the opportunity to get away. What could happen is (a support group member) could take the daughter or husband for the day," Gangel said. "Sometimes, it is a big job taking care of mental illness."

A support group also gives participants a chance to hear first-hand about medication, both what works and what does not. The more information patients and their family members have about medication and their side effects, the better equipped they are to make choices, Gangel said.

Like many mental ill patients, the Lorches' daughter's schizophrenia was diagnosed not by her symptoms, but by what medication did not work.

"One of the frustrations that the family goes through is that symptoms are usually quite similar and it takes a long time to be diagnosed," Gangel said. "And sometimes it is easier to diagnosed by what medication is not working."

The Lorches see the support group as self-perpetuating, as knowledge and resources continues to be passed and everyone helps.

"If there is a need -- which is my gut feeling -- then it will take care of itself," Charles said.

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