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The Forgotten Victims: Parents of the Mentally Ill

Imagine your 15 year old son or daughter is diagnosed with muscular sclerosis, cystic fibrosis or even cancer. Likely, your friends, family and community would drop everything to be by your side.

But if your child is diagnosed with schizophrenia, they might not appear until the funeral.

The recent case of Christopher Skelly brought this conversation to mind. This promising young man fell victim to the voices in his head, mainly the ‘Commander’ who told him to jump off of a bridge. His family did everything they possible could to help him. They became the ‘pill police’ always trying to make sure that he took his medication. They took time off work to care for him. They loved him. But their love was not enough to keep this young man alive. The system let him down. Society let him down.

Falling Through the Cracks

This young man, who suffered his first schizophrenia related psychotic break in University, fell through the cracks of society. He did not qualify for many community resources because he hadn’t spent the required 50 days in a psychiatric hospital in order to qualify for a community crisis team.

Family’s like Christopher’s are left to take on the overwhelming burden of caring for someone with severe mental health challenges. There is not enough access to supportive housing, not enough access to emergency psychiatric care. Wait times extend months, if not years.

Where’s the Money?

In Ontario, Canada, the provincial government spent $16 Billion between 2004 and 2012 on health care. During that time, only $220 Million was spent on mental health. I speak about Ontario because that is where I live, but the comparison could be made anywhere in North America. We all sit idly by, hoping that someone else will do something about it. We are in the middle of an epidemic, and we need to start doing something.

If your child was diagnosed with a terminal physical illness, there would be gift-baskets at your door, offers of home visits from health care practitioners, people would be raising money for you and starting benefit charities. But if your child is diagnosed with schizophrenia, people will more than likely pull away.

If it wasn’t for my parents, I likely wouldn’t be alive today. My mental health challenges began at a young age and they were left to face the brunt of it on their own. They had no training in mental health, as most parents don’t and had to learn from the ground up.

Parents: The Real Front Line Workers

I’m one of the lucky ones. My parents did everything they possibly could to help me. But they had to do in on their own.

We can’t expect parents to singularly move this mountain. We need the same type of help that is offered to parents with children with physical disabilities.

The bottom line is physical health and mental health can no longer be separated. Schizophrenia, bipolar disorder and depression cause hundreds and hundreds of deaths per year.

The bottom line is that in the end, schizophrenia is no different than cancer and therefore, should be treated with the same respect.

Chris Curry’s website is here. Chris is also on Google+, Twitter and Facebook.

16 thoughts on “The Forgotten Victims: Parents of the Mentally Ill”

  1. I just stumbled upon this article and was presently surprised at the content. Judging by the title, I had expected there to be a bunch of disgruntled parents who couldn’t stand their mentally ill adult children. Unfortunately, my parents chose to be in denial when I needed them most. They just couldn’t fathom that their daughter, who made it all the way through law school and didn’t act like the stereotypical problem child, had Bipolar I. (People think I’m exaggerating when I say it nearly killed me!) I don’t think the idea of being on the front lines is something my parents find appealing, as it’s much less embarrassing to just keep it a dark family secret. Thankfully after nearly a year of me attending therapy and taking medication, they finally believe that I didn’t just suddenly decide to throw away two degrees in favor of welfare. Still, they’ve not once asked me what it’s like to have bipolar or how they can be of assistance if I go into another episode. At one point my father told me to “save it for the therapist.”

    Sadly, it’s not just co-workers, friends, or acquaintances who distance themselves after a diagnosis. Sometimes it’s the parents who do it. They might be there physically, but that doesn’t mean their hearts are in it. When I was suicidal for the first time and in a mixed episode, I was allowed to live with my parents until I stabilized. But I was pressured to find a job, to do everyone’s chores, and to avoid talking about bipolar disorder. Rather than worry about me or reach out to me when I isolated in my room, they got angry at me and accused me of being rude. But the reason I avoided them is because I was so close to suicide that any confrontation might have sent me over the edge. Every second of every day for about three months I felt like I was fighting for my life. And I literally was. One night I asked to let the dog sleep with me, because I was seriously afraid I would kill myself if left alone. My stepfather, the same one who accused me of faking my illness and being “oppressed by demons,” wouldn’t let me. Thankfully my mom took pity on me and let me borrow the cat. I would have crawled in bed with them if I thought they’d let me! Weird as it would be, I was just too terrified to sleep alone, and it had been a few days since I’d slept.

    So it’s very refreshing to hear that there are parents out there who are supportive and involved and stand up to social judgment out of love for their children, no matter what age. It’s amazing to me that some parents get involved in groups like NAMI and actually become part of the cause, so to speak. Parents like that are a blessing, and there’s no doubt their children are likely better off for it. I’m sure not all children with a mental illness are easy to live with, tolerate, or help. My parents got off “easy” compared with many others; I never got into drugs or alcohol, and I haven’t put them in debt. I haven’t screamed profanities at them or thrown things. But sometimes parents just aren’t equipped with the level of compassion necessary to be close to even those children who are well-behaved.

    In any case, I really do applaud those parents who have become advocates and who seek to educate others. To take that on when one doesn’t really have to, because one doesn’t personally have a mental illness, is very honorable. I’m trying to convince my mom to go with me to NAMI. I really hope she does.

  2. Hi Anna,

    Thank you so much for sharing your story, it has not been easy for you and it must have been tough to share. You are brave for reaching out.

    I have a few things to suggest:
    -reach out to local mental health organizations. There is a US services locator here: http://store.samhsa.gov/mhlocator
    -You can also reach out to mental health groups like NAMI
    -You need to take care of your own mental health, and not just your family’s, couple’s counselling would be great if you could get it
    -You may need to consider a break from your son. Sometimes it’s time to make a break from even a loved one when they’re harming your mental health so severely. You are expected to use your own oxygen mask on the plane before others – if you can’t breathe then you can’t help anyone else.

    It really sounds like your son is in a lot of pain and he’s just dealing with it in the best way he knows how – which isn’t very good. It is up to you whether you want to take that break, but that is up to you!

    Also, try reading this book as it is about helping someone to get help and may be very useful for you. http://www.youneedhelpbook.com/You_Need_Help/Overview.html
    HealthyPlace.com and myself do not endorse this book but it may interest you and may be helpful.

    Also here are our hotline resources page for additional and immediate help:
    http://www.healthyplace.com/other-info/resources/mental-health-hotline-numbers-and-referral-resources/

    I wish you the best of luck and hope that something I said was helpful. Please hang in there.
    Andrea

  3. I am new to all this so bear with me. I need guidance. My son is 30 years old. He grew up as a very quiet and intense person. Never showed his feelings. His pre-school teacher called him, sarcastically, “the old man” at age 5. He never wanted to join in and felt bored by what others were doing. He never did drugs or got in trouble throughout adolescent years. First change in behavior was that he dropped out of high school and took and passed his GED. Said, at 16, school was not for him and he immediately got a full time job at a mini-market as cashier. He bounced from job to job, not getting along with someone was usually what he told us was his reason for quitting. He always needed money and my husband would give him an allowance when he needed money. He was also given a car to use when he needed it. He started lying about a lot of things. He saw a doctor for moods problems (at our insistence) and was put on Zoloft. In the meantime, he got in minor accidents, i.e., side mirror hanging off car after he returned the car. He moved out at 18. He has gone through so many roommates, so many apartments, so many jobs and it’s always the other guy’s fault, never anything to do with him. He comes across as very charming, very cool, very intelligent (not bragging, just trying to show how he always presents himself in job interview and meeting potential new roommates and meeting anyone that he needs something from. He was involved in a metal band and he made himself in charge of “everything and everyone”. He admits he is very OCD and needs to control everything. He started using drugs when he moved back in with us because he had no place to go. His behavior was very erratic. I found many, many bottles of hard liquor in his closet. I also found out that he was using marijuana. I asked him if he was drinking. He said he wasn’t. When I confronted him with the liquor bottles (there were 5 Maker’s Mark) he said he only used it from time to time. I started to smell the marijuana and asked him if he was using. He said “no”. I know what it smells like, so I knew it was a lie. He would try to get jobs but again always quit because someone else was lazy, ignorant, stupid, etc., etc. Would never admit to doing anything to cause his dismissal. One night I smelled marijuana and went into his room. He was drunk and high. It was winter. He had a heater on in his room and he was trying to stamp out a small fire with his blanket. He was completely calm and said, “don’t worry about it.” I sent him to mental health professionals. He did not and to this day will not talk “to a stranger about personal things”. He just wants his anti-depression med. I moved with my husband to another state and left him behind. Since he refused counseling and said he could handle his drinking we decided to retire in another state. We gave him one of the cars to use. Within the three years we were away, he would call and ask for money for food. We gave him small amounts so that hopefully he would only buy food and not drugs or alcohol. In our third year away, he had been in an accident and was given a DUI. In the meantime, we lost our house when it went “underwater” in the housing scourge that took place for us in 2010. We moved into a small apartment with very little money and no jobs available. It was really, really hard. Our car was confiscated in the middle of the night. We sold our belongings so we could eat. My husband was able to work for the landlord so we only had to pay half the rent (and it was a dump!) but we had no other choices. Our son could not work at all because of his DUI so we had no other choice than to have him move to the present state we are in. He came down and was drunk when he arrived. The car was in bad shape externally from getting in little accidents probably from being high. That car was then confiscated. Our son lived with us for a few months. During that time, he would get beer and get drunk. He took the car one night and got pulled over for his second DUI. After this happened he was absolutely out of control, would pick fights in bars, would talk about revenge on all the people who had he fired from jobs. We decided that we could not afford to live where we were so we planned to move back to our home state. It was a nightmare. We ended up selling most of our belongings and went back home in a one way moving van. We got a small apartment and a family member gave us enough money to buy a cheap car. Our son would sneak out and get drunk. He would trash talk and argue with everyone in the bar and probably was told to get out. He would come home and not be violent in his actions but scary enough with just his words that I was terrified. ( I had grown up in a violent home and the fear all came back.) My husband would get him into his room and tell him not to come out. He was be yelling and screaming in the next room and I could not, would not fall asleep until he passed out. From that point on, my husband despised him and did not want to get him help. My husband was mad at me for trying to help him. He wanted him OUT. One night he called from a bar. It was snowing, he was drunk and he wanted a ride home. It was 12:00 midnight. My husband said “NO” and hung up on him. He walked home (only four blocks) but called our phone and left 22 voice mails saying, “Fuck you, I hope you die.” The next morning he apologized. We moved again because we could not afford to live in the apartment. My son had to appear in court. We told him to take care of it himself. He was on his own if he got in trouble. He lost his license for a year which sort of set him to stopped using. He had no job, no money. We gave him money only for his depression visits and depression meds. He settled down. I went to a social worker and explained all that I have told you. He told me that I should have called the police on him for every time he pulled his stunts and that I should tell him to leave and get his own place. My husband would not talk to him at all. I had to tell him. I expected the worst. I even feared that he might try to hurt me but, unbelievably, he moved out. He got a permanent job and was doing really well. He was working the hardest at his job and wanted more money and more recognition from his employer. He started to hassle his boss relententlessly about a raise, a promotion. He said he was doing the work of the other lazy people and demanded a raise. He made his situation worse and worse. He couldn’t function. He went from temp job to temp job. The whole scenario all over again. He quit his fifth job in a year last week. He wants to live with us again because no one will live with him. He refuses therapy. He says he is fine. He just wants the meds. We sent him to psychiatrist after psychiatrist. We found one who prescribed him a new med (diazepam) which he has been abusing.
    So sorry this is so long but I’m lost. I don’t have my husband’s support. He is actually mad at me, even though he claims he’s not. My son can’t live with us. He has drained us of all our money. I recently pawned my engagement ring and wedding band for food and rent. My husband has a low paying part time job to supplement our social security but it’s not enough. We do not make enough to qualify for any government help because, believe it or not, they say our income is too high.
    I don’t know what to do. I don’t know where to start. Do I put him out on the street? Do I call the police? He will not agree to voluntarily go to a treatment facility (which is kind of moot, because we couldn’t afford to pay for it). Can someone please, please, tell me what to do. I feel desperate. My husband is not eating and not sleeping. He had a heart attack recently and has cancer. I’m beginning to think about suicide because I can’t face another day with no hope. Our family said they will not help us because we have not repaid the money they loaned us even though we tell them we would absolutely do it if we were able. Please someone help me.

    thanks

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