The Forgotten Victims: Parents of the Mentally Ill

Prominent writer and mental health activist Pete Earley has written a thoughtful blog examining the current issues confronting NAMI:
http://www.peteearley.com/2013/03/18/the-changing-face-of-nami/

I am a single parent of a young man who has a serious mental illness. Thank you so much for acknowledging the work of parents and family. We are the first responders to any crisis, yet in Ontario we are paid only lip service by the current provincial government and their LHINS. Our lives have been turned upside down in this hellish journey. Not only is there lack of services, but if you try to input in decisions, you are paid lipservice to. The current community support services have staff that need more appropriate training. The 2010 Report to the Select Committee recommended this. It is Recommendation 9. Privacy legislation is open to many interpretations and is sometimes used as a way to shield the agency from accountability. The situation in Ontario is so bad that myself and other parents and family members have come together to develop our own Supportive Housing Agency. We are doing this in our retirement years. It is our way of trying to ensure that our children will have appropriate housing after we are gone.

Wow, Chris, the opening two sentences of your article are so powerful and, sadly, so true. Because our child was an adult when diagnosed, we couldn't infringe on her privacy by telling anyone beyond close family and friends about our struggles. Even to those we told, they couldn't possibly understand how hard it was to help her receive the support and treatment she needed and deal with the fallout from her manic episodes all the while trying to keep rest of our life (family, work, finances) functioning. On top of that we had our own sense of loss and grief to manage. We were entirely on our own, and we were a complete wreck. There was no one offering to mow our lawn, no one bringing casseroles, no one offering to take our youngest child to and from after school activities. There were many times when my husband and I would say that if she had a physical illness we would have been flooded with offers of support. But most people cannot see beyond their simple understanding of mental illness. One family member even remarked to me that she didn't understand what I was complaining about because "everyone is a little bipolar" and we should be grateful our child didn't have cancer.
Well, it has taken two years, but we're finally able to accept our new reality. Thanks to insurance, we were able to get my daughter the ongoing treatment she needs. Thanks to NAMI's Family to Family course we were able to learn more about mental illness, treatments, and resources. And thanks to private counselors, we received the emotional support and coping tools we need to help us manage the roller coaster ride we were (and still are) on.
My heart breaks for those who do not have the family support that you and my daughter have. I sat in my NAMI class looking around the room at the 20 of so parents who were filled with so much pain and so desperate for answers on behalf of their loved ones. While I was comforted to know I really wasn't alone, I couldn't help but think how many thousands of young adults like ours would suffer because they didn't have family members to seek help on their behalf.
I agree with you that mental illness needs to be given the same level of regard as physical illness, and to that end, I remain hopeful. It wasn't too long ago that people were afraid of "catching" cancer or AIDs, and look at how advocacy has changed the stigma of those illnesses. So I guess in the meantime it's up to bloggers like you and parents like me to stand up for mental health. Thank you for sharing your story with the world, Chris.

You are so right in your comparison with other diseases and schizophrenia. One other advantage that other diseases have is that there is lots of cause and cure scientific research being done to
rid the world cancer and cardiac diseases.
Scientific research into schizophrenia gets too few dollars,(I'm told that it is much too difficult to study so other SMIs are getting the most research ) while social science research into SMI continues, despite its confounded variables.

Clearly there is so much rubbish peddled regarding the causes of schizophrenia and allied disorders. Some very silly social theories have been pushed and they have entered into policy to the detriment of the person afflicted and to the families who are trying to gain access to care and appropriate treatment. And some of these false idea persist through thick and thin. Why else would families be kept out of the circle of care when their relative is so desperately ill( trapped by a brain disease) if there was not family blaming still going on. Some of the things that I have personally heard said to families over the last thirty years is quite shocking and I know that they never would have been said to the families who have a relative suffering from cancer . Multiple Scerosis amylateral Sclerosis and so on. Press on families because you are the ones to hold the key to changing the nonsense notions. Just a simple " How do you know that?" should be said to some misguided individuals to scupper their dogmatic views regarding the nature and cause of these psychoses. Patricia Forsdyke.

My 17 yr old son was just recently a few months ago found to have schizophrenia and I find everything your saying to be true to the point! Friends are no longer friend's, family pretend they are busy .... I am a single mom of 6 alone in this venture. Because of his age, he is not yet eliable for adult services through our county. The school board has provided home schooling for his education but he is totally isolated now in our home. He has talked of not wanting to live with this condition so I have him under 24/7 suiside watch, taking him to thearphy & reaching higher than we ever have before but all of that still doesn't take the place of true friends & family treating you like they care & loving you the way they did before all of it. It's frustrating for him because we had also just recently moved so he has no new friends where we live. I am at witt's end trying to come up with thing's that I can do to help make his life as normal of a teenage boy's life as possible. There is no pain greater than watching your child in pain & suffering mentally or physically!

I also feeling exactly what Anne Marie is feeling. Not only my 17 yr old son with schizophrenia, I have 2 younger boy's age's 12 & 14 that are suffering from all of this too. I can't just leave to do for them like I should. My 14 yr old is severe adhd also and need's an outlet to his energy. We live in a remote country setting so not many public options close by either. Someday's all I can do is pray for stability for our family ....

There are answers out there ..... keep looking. I know the anguish as bipolar runs in my family. There are so many struggling. There is hope for health restoration. If you are looking for an alternative to review please contact me.

I have BP 1 and if it weren't for my parents, I would be institutionalized or dead. I am awaiting treatment now, and it has already been one month I've been living with them and in their care. I need their help to eat properly and to manage my affairs. I am usually very capable of this, but will need assistance for several months to fully recover. I feel my parents and I need way more support.
Thank you for all the parents that make the huge sacrifices of live, support, time, money and energy to support their ill children.

My sister and I have been working on a project entitled "Behind The Wall: the true story of mental illness as told by parents," which is a collection of seven true stories by parents whose children live with serious mental illness. Our intention was to bring this heroic struggle of parents into the light. These parent have much insight to offer other parents who are beginning the journey of parenting a child with mental illness. Actually, their insights are invaluable to any parent. We have learned so much from them.
It is our hope to help reduce stigma with these stories, and to make others aware of the struggle that goes on in one in four households.
Thank you for this post.

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

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

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.