• Fri, Dec 21 2012

If My Daughter Has A Mental Illness, I Worry About How I Will Care For Her

shutterstock_103291430Although the instinct following the Sandy Hook massacre, for some, was to direct obscenities toward the gunman, my feelings were different. Instead, I felt a deep sadness over the question of whether this might not have happened if the gunman had been living in an institution where he could have been treated for his illness and kept from accessing guns.

The details still aren’t clear on what psychological illness he had, but I refuse to believe a human in his right mind would randomly open fire on innocent children.

After reading a book called January First, a memoir by Michael Schofield about a father trying to handle his violent schizophrenic preschool-aged daughter, I started to understand how difficult it is for families to get help for their mentally ill children. For instance, I didn’t realize that there’s no definitive place you can take your sick child for long periods of time—hospitals are generally short-term stays, and few even have openings for the mentally ill. If you don’t have much money, forget the idea of a hospital altogether. And the thought of taking one’s violent child to prison is completely absurd. Even a young adult with a mental illness shouldn’t be pent up in prison; though criminals choose to commit their crimes, the mentally ill don’t choose their illnesses.

Additionally, there’s no sensible separation of people within these facilities based on their level of mental illness. I can vouch for this. I spent three days in the psych ward when I was 20, which I don’t tell people about often in part because of the stigma. I was clinically depressed and had been taking meds, but at that moment I was just in a really terrible spot after a breakup and had deeply injured my wrists during a panic attack. With the help of a close friend, I admitted myself to the hospital.

I got there around midnight, where they took at least two hours to determine whether I was a threat to myself or not. After saying they didn’t feel comfortable letting me return home, they transported me to a different hospital’s psych ward. I got there at 4:30 in the morning and had to fill out paperwork for a half hour. At five a.m., emotionally and physically exhausted, I thought they were going to let me go to bed, but they said I had to speak with a psychiatrist. I sat in her office, dumbstruck as she began to unload on me.

“You see those cuts on your wrist? You seriously think any man will want to marry you with those? You seriously think you’ll be able to get a good job?”

Maybe this tough love approach worked on some people, but she pushed me over the edge.

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  • lucygoosey74

    Wow, the way you were treated by your doctor was horribly wrong and I’m so sorry you had to go thruogh that. I’m bipolar and have been hospitalized for it a couple times. Being in the hospital alwas sucks, but I was lucky to be taken care of by competant and caring staff. I suffered for many years before I was properly diagnosed, I had horrible experiences with medications amongst other things.

  • Marissa

    I fear this for my baby in utero. I will already be taking care of my mentally ill sister one day, which was reason enough to second guess if I should have kids. Your best bet is to write your leaders as suggested by NAMI.

    http://capwiz.com/nami/home/

  • http://helloalle.com/ Alle

    You are absolutely right to worry. My younger brother is mentally ill and dealing with his illness and caring for him has become a nightmare for my mother and me.

    There are 72 hour involuntary holds in emergency rooms. There are ten-day voluntary stays in psych wards, if you can find a bed in one. There’s outpatient care. There are shrinks. We’ve done that eight times since March. Those things are great and I’m glad they exist, but they don’t come close to providing the level of long-term care necessary for someone who can’t live in the world without hurting themselves or someone else.

    People who say that parents should just lock their kids up really have never dealt with the reality of the situation. There’s very little help for the long term that isn’t prison. And that’s beyond shameful.

  • Lori B.

    I work for a non-profit agency that provides housing and support to adults with mental illness. I am very proud of the work we do and we do so through Medicaid funding, so we are able to help those with little resources. However, much of our housing is intended to be short-term, about year, to give us the opportunity to help many of these individuals live more independently in the community. In our state there has been a push to have less and less supervised living for this part of the population. Because we strive to provide our clients with a living situation that is as close to “normal” as possible we are not able to provide the same level of security as a hospital. What does this mean for those who are persistently and severely mentally ill with violent tendencies? They are closing many mental health facilities in our area that would be best equipped to help them, and the patients are now being pushed into the community with little or no support and the inability to care for themselves. I am so proud of where I work and I hope something like this wold be available to the writer’s daughter should she need it in the future.

  • Andrea

    I don’t know what the best solution is, I suspect it varies from case to case and since I have zero knowledge of the subject, I can’t say.

    But I DO know ONE thing you shouldn’t do if you live and care for someone with a mental illness: you do not keep guns in the house. And before someone calls me an insensitive bitch, suggest to one of the 20 grieving parents in CT that this shouldn’t be the case.

    • http://www.facebook.com/helen.hyde Helen Hyde

      But the mentally ill can get their own guns in America, I thought that was the problem?

    • Andrea

      Seriously??????

    • http://www.facebook.com/helen.hyde Helen Hyde

      There are no uniform county-wide standards for mental nor criminal background checks for firearms … So you can preach about not having firearms if you’re caring for a mentally ill person all you like, when the fact that they can get their own makes your point completely moot.

    • Andrea

      No it DOESN’T. It’s all about reducing risks. Nothing is gonna be perfect.

    • AlbinoWino

      Well, it can depend where you purchase your firearm. Generally you have to have committed a crime that is associated with a mental illness to show up on a background check. Also, gun shows don’t require a background check. In the case of the Virginia Tech killer he should have been red flagged and unable to buy guns. Due to gaps between federal and Virginia state laws, the state did not report Cho’s legal status but it was known that he was a danger. Since that shooting Virginia has taken some steps to improve this process.

    • lucygoosey74

      That is not necessarily true. I am bipolar and grwe up with guns. My father is a firearms instructer and I learned to shoot at 10 years old. I am now 38 and shoot in competitions. Never in my life have I been tempted to go on a shooting spree or hurt anyone with a gun. Making a broad statement such as “if you live with and care for someone with mental illness you do not keep guns in the house.” is putting an unfair stigma on the millions of people who have a mental illness and who are not cold blooded murderers. There is a big fucking difference. You just sound incredibly ignorant.

    • Psych Student

      My bigger concern about having a gun in the same house as a bipolar person would be the suicide temptation. Though, the absence of guns won’t stop a determined person (with or without any diagnosed mental disorder) from committing suicide.

  • Cat

    I commend you for being so candid, great article. Also I recommend to watch “We Need to Talk About Kevin” or read “Crazy” by Pete Early for some insight into what it might be like to raise a child with mental illness and violent impulses.

  • AlbinoWino

    I guess I can see this issue from various sides having worked in mental health for a few years in a facility for teenage girls with severe emotional and behavioral problems. It’s a tough field and it definitely hardens you. I watched girls age out of the system and shudder to think about some of them out in the world, dangers to themselves and often others. I think that as a country we should make these resources more available to those who need it. Our referrals went way down after mental health funding was cut. After a while we only had one actual mental facility open to people under 18 so we started to get kids with more severe problems our facility wasn’t equipped to deal with. We couldn’t administer meds by force or ever lock someone in a room. We had to begin to rely on area hospitals and police more frequently.

    On the other side of this I think we sell ourselves short when we assume that all of these people want help. A lot of them don’t and we essentially have to wait for them to do some crazy stuff in order to justify putting them anywhere and that’s often temporary. We have a poor history in our nation of how we’ve treated the mentally ill (lobotomies, etc) and do indeed cross into a shifty area when we’re always determining who needs to be committed and who doesn’t. People are entitled to their civil liberties and we can’t just institutionalize anyone based on speculation. The scary thing is that some of the people who commit these heinous crimes are able to fly under the radar. We can’t forget that the mentally ill are more likely to be the victims of crime rather than the perpetrators.

  • April

    My teenage daughter has bipolar disorder. It has been a struggle to get the care she needs. “Major mental illness” is not covered by our insurance so we’ve had to pay out of pocket for most of her care. Her medical bills have wiped us out. We had to downsize our home. I changed jobs to work from home to be more available to her. We are fortunate that her doctors’ strategy of care is working and that our town has a public high school that can accommodate her special needs. However, we know we are extremely lucky. It’s been a long road to get here and we know we will be monitoring her care for the rest of her life. I feel for all parents dealing with different levels of mental illness in their children. I really hope to see attitudes change about caring for the mentally ill.

  • Heather

    The mental health systems are never perfect, no matter where we live, but I have to say as a psychiatric nurse I am very thankful I do not live in America! The majority of people with a severe and deblilitating mental illness are unable to work, particularly those with no family support. No wonder people continually slip through the system if they literally can’t afford to get the help they need.

    This whole situation has broken the hearts of the world. If he had been under proper psychiatric care, even in the community, the danger he posed would likely have been picked up before this happened.

  • Kristina

    I understand the concern. I work in healthcare, and it the future concerns me. For example, what happens to all the children and adults being cared for with mental and physical illnesses once their parents are too old or become ill? Are these poor kids going to end up in long term nursing home care? How are the staff, who are only trained in the physical care of patients, like CNA’s, going to cope with a 60 year old autistic patient? Anytime you are not sure if your child will need help or not its a worry. Much less worrying about a child or person who will not be able to lead a normal life caring for themselves, then its a life time of worrying what will happen once you’re gone as well.

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  • sandra

    Amanda – my daughter is in a treatment program and has been away from home since June – your words were the FIRST that spoke directly to my concerns and fears about all of this treatment. I am a single mom fighting for at least some sustainable level of child support. I need to change my work situation so I can be at home when she comes home…I used up my company’s good graces when she first took ill and I had to stay with her 24/7 for several months before we found out what we could do for her (therapeutic wilderness then a therapeutic boarding school). Before we found the right place though she bounced from psych ward to lame residential treatment programs back to psych wards that were not at all equipped to take care of a brilliant, loving, struggling teen without a history of behavioral or academic problems.
    Because they didn’t know how to deal with her, she is on ridiculously strong meds that make her truly crazy. She is far away from me (her advocate and loving mother!) because there is no treatment available here in my state that isn’t a psych ward or a juvenile hall and my kid never did anything illegal – and the psych wards and local residential treatment centers are a joke (and mix her in with kids who have severe behavioral problems).
    You are right about the money part – if you want treatment, and you can afford it, you need to get your hands on about $100k in order to get even mediochre help for a kid with mental illness. We were lucky and did manage to get some financial help..but now we are enmeshed in a system that takes away everyone’s rights and my poor daughter is in a black box of a treatment center…I get very little contact with her and when I do its horrifying what she tells me. I spend countless hours trying to get her the medical attention she needs for TMJ, and trying to figure out if the non-responsive staff are actually giving her the meds she needs and whether they have received the shipment of meds I provided…the list goes on.
    She knows she needs help still so she hasn’t begged me to take her home – but its pushing her (and me) to her limits to stay there and reap any benefits she can find.
    They punish her if she slips into depression or slips up and acts slightly defiant by threatening to take away her family time!!! Or they don’t let her have “down time” if she hasn’t earned her ‘privs’. Its not all its cracked up to be and its horrifyingly expensive!!!

    The psych ward experience she had was identical to yours, Amanda. (And she got sent home too). All of the places she has gone (with the ONE exception being a fantastic therapeutic Wilderness program) make her feel crazier than she is. She is not crazy but she is extra empathetic and sensitive to all the energy out there. This would make anyone crazy and need coping skills, and left to her own devices she nearly killed herself by trying to cope. Now she has an understanding of how her mind works, how it differs from the “norm” and she needs to learn to live in this world but I also think she needs support to develop her special talents (we call those skills things like “reiki” and “energetic healing” and “shamanism” when people aren’t in treatment centers).

    I need some parent support…I need help finding resources so I can get her home and help her cope in a loving peaceful environment….I need people to talk to who have “been there” and can help me remember that I am not the bad guy here for wanting to bring my daughter HOME and to care for her near her loving family – not in some shallow militaristic fancy boarding school setting (for $8K per month and all the staff complain about low wages!!) in utah!!! Are there others I can talk with? Has anyone pioneered a better more loving approach to taking care of “mentally ill” kids? I know this is crazy to do on a blog but here is my email – Please – anyone – contact me at imoyik@gmail.com if you have some ideas about where I can get real support and help (and I am beginning to look for financial support too..the grandparent well is running dry soon.) Most of these places are not equipped to handle parents who are involved and healthy…and are especially not equipped to handle people who believe that there are alternatives to thinking that these mental differences can be harnessed and managed in order to do good in the world instead of evil.
    These places are used to behavioral problems – not genuine mental illness. My daughter has healthy friends and family at home…she is surrounded by people who are making her doubt the good things she has in her life, they tell her her experiences are not real. She is on such hard core drugs that she doesn’t feel right at all – I need to have her close to home but still getting help. Seems there has to be a way!

    And, Amanda…I had the exact same reaction to Sandy Hook as you say you did.

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