Albany, NY (WRGB) -- John and Debbie Kempf are mourning the loss of their daughter, Carly, who passed away in February at the age of 22. CBS6's Lara Bryn sat down with Carly's parents to share their story as part of our May Mental Health special: Breaking the Silence.
This is Carly Kempf in happier times, moments that her parents, John and Debbie, love to look back on.
"You know, all her, anything that we had her in that she loved...piano. She was the best piano player ever. Very artistic," said Carly's mom, Debbie.
"Carly was, you know, growing up as a child, the most energetic, fun, smiling all the time, thoughtful, caring, giving child. Tons of friends. Just always, always happy," said her father, John.
But in middle school, things started to change.
"Until middle school, right around middle school time, she went through a period of bullying in middle school. And, you know, that was prolonged for a period of time. And until one day she came to us and said, You know, she didn't want to go to school anymore. And from then forward, you know, it went downhill."
They say she isolated and dropped out of dance and piano.
"So once she started isolating and we knew there was, you know, a bigger issue here behind, we started to look for help," said John Kempf. "She was in multiple places, multiple programs for help."
Some were residential, some not. Most dealt with depression and anxiety. But it didn't end there.
"Other things came along as she, the more residential she went into, the more things she acquired, you know, by looking at what others were doing more. So that was also a downfall to that," said Carly's mom, Debbie.
"From there, you know, it was much more pronounced than rollercoaster ride," John continued.
Ultimately Carly's mental health issues displayed themselves in the form of an eating disorder. "We had done all of our research and talked to the experts. You know, and everything that she had, both psychiatric and the physical ailments that were now starting to, you know, be a result of her anorexia, we knew that those were all recoverable."
There were glimmers of hope. "She was spirited. She was enthusiastic. She was, you know, she was talking with the last few months, she was talking about something she was going to do later."
But ultimately all those ailments that her parents knew were recoverable, Carly never fully recovered from.
"It was when people gave up on her," said John Kempf. "When a psychiatrist or a therapist said, 'I can't help you anymore,' or when a hospital said, 'You need to be somewhere else. You need to be in a different program, and we can't help you.'"
"Or it was too complex, which mental illness is complex," said Debbie Kempf. "So no matter how you look at it, it's not easy, but the system doesn't want to look into it, and they don't want to spend the time."
CBS6 sat down with a panel of experts, including Dr. Cindi Stone, the director of Community Care Physician's Integrated Behavioral Health Program, Tawana Davis, the Associate VP for Student Life at Russell Sage College and Sharon Horton, who has a personal experience with mental illness after years of caring for a loved one with mental illness.
Shortly before Carly's 18th birthday, one doctor recommended to John and Debbie that they get guardianship for Carly, allowing them to make medical decisions on her behalf once she became an adult. "A lot of these people are sick enough where they don't know that they need the help and like in her case, a doctor down there said, If you don't get guardianship, she will be dead within a year from being 18," said Debbie Kempf.
"When the doctors are saying things like this to you, as parents, what's running through your minds?" CBS6's Lara Bryn asked the Kempf's.
"At that point it was, We'll do whatever it takes. We'll do whatever it takes," said John Kempf. "We spent tens, hundreds of hours working on it and working on working on what we needed to do. And all the while, we're also working with the hospitals or fighting the hospitals to try to get her the care that she needs."
Several of the programs Carly entered offered 90 days of treatment. After that "most of the time, it was 'we've had her for a long period of time. We've done what we can. Now you guys need to keep it going,'" said John Kempf.
"And I don't think people realize, as parents we did a lot of fighting and a lot of, like I said, we got several more years probably out of our daughter, which is a terrible, terrible thing to say, but it's the truth. She would have been gone a long time ago if we didn't fight and appeal and do all those things," said Debbie Kempf.
Carly did pass away in February earlier this year. She was just 22 years old. In her obituary, her father, John, wrote in part "for those medical professionals that thought that Carly should be allowed to die in peace, shame on you for not realizing that you were listening to a mental illness that was successful in convincing you that there was no hope for a 15 to 19-year-old adolescent."
When it came to getting medical treatment for her their daughter, John and Debbie said they did everything they could. "She was in a hospital, in a local hospital, and she had been in the hospital a couple times before in an eating disorder program. One of the three comprehensive care centers for eating disorders in New York State is right here in the local area. And she had been in that previously, and they decided that this time that they weren't going to help her," said John Kempf.
Carly was 18 or 19 years old at the time and struggling with an eating disorder as well as both the physical and mental complications that stem from it. Her parents say the hospital essentially gave them an ultimatum. "They said 'if you don't stop refusing, maybe you need to be in a hospice, because that's your only option going forward if you don't accept treatment, what we're trying to do for you.'"
They say offering hospice moved things in the wrong direction for Carly. "On that point, she was like, 'wow, this sounds like this is a new thing that I should try out.'"
"She learned from that. Again she was very smart. She knew now that she could basically say, 'you know, I don't want treatment. I'm not going to get better. And we knew that that that wasn't the case.'"
John and Debbie say there were psychiatric pieces and physical ailments that were starting to be a result of Carly's anorexia. "It was anorexia. It was OCD. Her final diagnosis had B-type personality disorder, factitious disorder in it, anxiety, major depressive disorder So it was a combination of a lot of things."
Physically, her parents say she suffered from gastrointestinal problems, nausea, and an inability to move food through the intestines.
"But her OCD was also very powerful, probably more so powerful than the eating disorder, and she could just not eat. And she ended up having a stroke, probably because she was so malnourished, the lowest BMI she had ever been at. And she just never came out of it. And her body just couldn't handle it. All kinds of heart things happened. She was just very sick," said Debbie Kempf.
Not to mention infections as a result of sepsis, electrolyte disregulation and fluctuating blood pressure. Over the years, the Kempf's sought help not only in the Capital Region but also downstate, in western New York, even out in Denver. But the outcome was always the same. They handled the acute medical piece of it and they had promised that we'll keep going through the psychiatric therapeutic portion of it. At the end of 90 days, they gave up. That was the really..." said Carly's father.
"That's pretty much the pattern...She just kept plummeting every single time she came back from even the best facilities," said Carly's mother.
"The in-disorder facilities, they know what they're dealing with for the most part. It's the medical units that just don't know."
John and Debbie Kempf continue to mourn the loss of their daughter, Carly. "I actually wrote that obituary about a year ago, most of it."
"Because you thought that was the end?" CBS6's Lara Bryn asked.
"Yeah, there were several times that she had been that low."
The Kempf's now have a message for others who are acting as the support system for anyone suffering from mental illness. "As parents, you're the expert. You are the expert on your child. Don't let anybody, any provider, any other...telling you what needs to be done."
Not only are caregivers the most educated on their loved one, the Kempf's say they also took it upon themselves to become educated on the issues from which their daughter was suffering.
"You will notice those changes before anybody else, and you will know how your child will react to different treatments or changes more so than anybody else will...And so make sure that you and the others know and providers know that you have done your research. And that's the other piece of it. It's just the education piece," said Carly's father.
Their education wound up being useful when it came to working with providers. "We became experts in the connections that we made with different people from as far away as California and Denver and Texas and Florida and New York City andin this area," said John Kempf. "We had more contacts than any other provider that was out there, and we provided them with the publications and with the research that had been done in that case."
At times they felt better educated than some of Carly's providers. "We've been told that out of eight years of getting their education, their experience, something like two hours is spent on eating disorders. Out of eight years. The highest mortality rate of any mental illness is with eating disorders. And so with that, to only have two hours to be spent during the entire eight-year-period, focused on that, clearly it's not enough," said John.
When Carly died, John and Debbie published an obituary that stood out from other obits, using strong words to call out the healthcare system and how it failed their daughter, saying in part "We really can't thank any hospitals for their care, because they all turned her away in the end after talking to their legal team and said they couldn't help her and we should just bring her home and let her pass away." There was one doctor who they said stood out among the rest. "even though the hospital didn't want to treat her, we had one doctor that spent every single day, you know, first, you know, listening to us and listening to the people that we had talked to, nationwide experts, and then every day he spent hours looking for places and talking to people."
That allowed them to find help for Carly out in Denver. At one point, they also used billboards and protests outside hospitals to get their message across to providers. "And that did get attention...and we got a change in her treatment as a result of that."
Now that Carly has passed, John and Debbie are taking what they've learned and trying to help other caregivers in similar positions. "That education piece is something that I'm committed to trying to help, especially locally."
They have an ongoing thread with experts they met during the fight for Carly's life as they try to bring more education to providers locally. They've also relied on nonprofit organizations like Flutter of Hope in Saratoga County. Carly Kempf was honored at their eating disorder walk in Saratoga Springs earlier this month. And there's one message the Kempf's have for caregivers: be careful what you tell patients in need.
"It's when the message is you have no hope. Treatment is futile," said John Kempf. "There is no such thing as a terminal mental illness. There's no terminal anorexia. There's no terminal OCD. Those diagnoses don't exist for a reason because they are treatable. They're only become terminal when they're not treated and when people suffering from those mental illnesses and their families are pushed out of the system and don't get the treatment that they need."
CBS6 also sat down with Assemblymember Angelo Santabarbara who is on the state Standing Committee on Mental Health and spoke to the legislation and work lawmakers are involved in when it comes to mental health and mental illness.