“All the hopes you have for your daughter’s future are dashed,” Mary Ann said. “She wants to go to college, have a family, but there’s no guarantee she will be able to achieve those goals.”
Kristen was hospitalized in 1995 and doctors diagnosed her with schizophrenia. She has been hospitalized 11 times since.
And if the diagnosis wasn’t enough, Mary Ann was heartbroken to see the relationship between Kristen and her younger sister Laura fall apart. Laura and Kristen were very close growing up. But after Kristen became ill, there was not much of a relationship to have, Laura said. “The worst part of the disease is it takes someone you’ve known for 15 years and obliterates them,” she said.
Kristen’s illness also meant that she and Laura’s parents became almost completely focused on Kristen. “My normal life and its successes weren’t discussed because we didn’t want to disappoint Kristen,” Laura said.
Today Kristen lives in a group home in Farmington, Mo., and is being treated successfully with the drug Clozaril (Clozapine), developed by NARSAD Scientific Council Member Herbert Meltzer, M.D., among others. “This has been a miracle,” Mary Ann said. “We can have conversations with her.”
And the relationship between Kristen and Laura is getting better. “The fact that Kristen has now regained the ability to communicate has completely changed the way we interact,” Laura said.
“The ability to have a logical conversation with her is huge,” Mary Ann said. For years, Kristen talked with jumbled words, lots of mumbling and made references to hallucinations she was having.
Both Mary Ann and Laura noted their surprise at an instance over the Thanksgiving holiday weekend when Kristen commented that the trash can was full and volunteered to empty it. Kristen’s rational response to the full trash can was a simple example of something the family hadn’t seen in her behavior since the onset of schizophrenia.
Mary Ann and Kristen’s father, Vince Todt, are divorced, but they are Kristen’s co-guardians and share a strong commitment to finding quality care for their daughter. Vince thinks that the family’s active role has had a very positive effect on Kristen’s recovery. “Kristen has our support and knows that we’re here for her,” he said. “That has helped her a lot in her recovery.
“For years and years Kristen’s illness was a struggle, and I think a lot of it had to do with Kristen not consistently taking her medications and the need to find the correct combination of medications,” Vince said. “The last few months of her recovery have been a pleasure. It’s been a long road to this point.”
The family agrees the rural facility where Kristen is living now provides good services for her, but Laura hopes with her sister’s recent improvement she’ll be able to successfully move into a more independent living situation closer to her in St. Louis. Finding the right combination of support services for Kristen has been a challenge, and leaves Laura feeling like she’s going in circles with some agencies. Despite the roadblocks, she keeps pushing forward. “People succeed in the system, we just need to figure out what it takes.”
Kristen herself has been talking about moving out on her own, Laura said. Whereas in the past, there was no follow-through, Kristen is projecting a budget for her living expenses. She has researched a service in St. Louis that will be sure she is taking her medicine. This kind of initiative gives Laura hope.
“I think getting better at being independent and working on her social skills are the next steps in her healing,” Laura said.
And off in the future, Kristen’s parents want her to be prepared for a time when they are no longer able to be her guardians. In the meantime, the entire family continues to advocate for the best treatment and care for Kristen, and hopes NARSAD-funded research will continue to play a role in improving Kristen’s life.
Mary Ann discovered NARSAD on a visit to a psychiatrist with Kristen. A NARSAD publication caught her attention, and she was drawn to its mission of finding better treatments and cures through the very best research.
“My hope is for what breakthroughs are to come, and I latched on to that shared vision with NARSAD,” Mary Ann said. “I can’t wait to find out exactly what’s going on in the brain, and discover a better treatment for schizophrenia.”
To be sure, through disappointments, missed opportunities and thrown away second chances, Mary Ann has stood by Kristen, Laura said. And now as Laura begins to play a more active role in Kristen’s care, she is hesitant and hopeful because things haven’t always worked out in the past as well as one would have hoped. “You don’t know what’s around the corner to make this better. I know it’s there, but it’s a matter of waiting on scientists to find it. I know there’s an answer, but if there’s no funding for the research, scientists can’t figure it out.”
With the support of NARSAD funding, scientists are indeed searching for what’s around the corner, and the next important breakthrough or discovery to improve the lives of all affected by a diagnosis of mental illness.