Schizophrenia and Parenting: Step In or Let Go?

Tuesday, May 31 2011 Randye Kaye

I have an adult child with schizophrenia. Parenting is about the precarious balance between stepping in to help - especially where mental illness is concerned.

A message comes to me via social media, along with an invitation to connect. It simply says, "My 27 year old child has schizophrenia, but will not get treatment." Oh boy, can I relate to that. Unfortunately, this is a major dilemma facing all of us who deal with mental illness in our families.

Parenting is always about the precarious balance between stepping in to help, and letting go to allow learning from experience. From a child's first steps to his or her first relationship, car, job, apartment...when to give advice? When to help? When to step back and watch them sink or swim?

For the parents of a child without a physical or mental illness, this process is difficult enough; for those who are dealing with illness in our children, it's that much harder. The consequences of stepping aside, of letting go, could be disastrous: poverty, hospitalization, an arrest, flight, or even - tragically - suicide.

Schizophrenia and Freedom Without Parents

Back when a hug was all it took...

My own son, Ben, 29, has just moved from seven years in a group home (24 hour staffing) to his own apartment. There is some support - a caseworker, medication supervision - but also a new lack of structure. No required group meetings. No chores scheduled. No one - except the roaches - to know if he washed the dishes or not.

Am I excited for him? Of course. Am I concerned? You bet I am. Is there much I can do? Only some things. He could crash, he could cheek his meds, he could oversleep and miss an appointment, he could become lonely and isolated. But if I call to see how he is, he sees right through me. "Mom, I'm fine. I'll get to work on time. Of course I' m taking my meds. I'm fine in the apartment all alone on my day off. Yes, I"ll unpack soon."

So I let him live. Alone. And I watch from the wings, ready to alert his caseworkers if I see any warning signs. Three days ago I saw the unmistakable (to me) signs that Ben had missed a day of meds - so I sounded the alarm to all new staff members who donot know his tricks yet. And now he's okay again - so far.

Now I only see him on family occasions, or on rainy days when he can't take his bike to work. Could he wind up in the hospital again if I am not there to witness symptoms? Yes, of course. And I hate that. But we have only so much control.

Parenting My Adult Son with Schizophrenia

As always, we do what we can and then hope for the best. Keep an eye out for trouble, and our hearts in a place of faith in Ben and his ability to make the adjustments to this new life. Scary? Oh yes. We do the best we can for our loved ones -secretly or openly - and then sometimes all that's left is to take care of ourselves and the rest of our family.

My mantra at these times? "Whatever happens, we will handle it somehow."

I don't always know how, but I know that we've managed before, and will again. And I ask for help when I need it.

Author: Randye Kaye

View all posts by Randye Kaye.

Schizophrenia and Parenting: Step In or Let Go?

mef123
says:
June, 2 2011 at 8:03 am

My son doesn't have schizophrenia but he does have adhd and severe anxiety. I know it's not the same but I worry so much about him. He wouldn't go on a school trip today because of his anxiety and it was a really nice trip to NYC. I'm scared of what he is missing out on. I'm also scared because his adhd makes him have these horrible rages (only at home) but they are so bad he will start throwing stuff around, flipping couches and hitting my husband and now me. Not hard but still. I worry so much.

Michele

In reply to by Anonymous (not verified)

Randye Kaye
says:
June, 2 2011 at 9:28 am

Hi Michele - Parental worry is universal, I think...and with ADHD, anxiety disorder, schizophrenia, etc. there seems to be so much more to worry about, so many losses we feel for your children. I hope you and your husband are getting some support and education about how to process all this. I know it helped us tremendously - still does. Thanks for writing, and I think HealthyPlace is a great place to start for info if you need it. Learning communication techniques saved our family dynamic in many ways. My son still has his illness, but at least we have learned how to react in a way that doesn't escalate an already tough situation. So hard. I know.
best,
Randye

In reply to by Anonymous (not verified)

Coryn
says:
May, 10 2018 at 2:19 am

Is there anything else going on with your son? Maybe bullying or something he won't talk about? It just sounds very familiar.

ros ashton
says:
June, 2 2011 at 8:58 am

this rings many bells for us especailly the last paragraph .thank you

In reply to by Anonymous (not verified)

Randye Kaye
says:
June, 2 2011 at 9:21 am

You are most welcome. Sometimes it just helps to know we're not the only ones...

MOMINGA
says:
June, 10 2011 at 4:49 am

My son 25 and about to be released from his ninth hospitalization in 4 years. He admitted himself because of fear of hurting himself. Once he got there and was stabilized he stopped taking the medicine and they released him. this was the first time he made a verbal threat to me while in the hospital and they still did not mandate that he take the medicine because (it was only over the phone) and he did not threaten anyone else. I am only one left who will deal with him in the family. I feel hopeless.

In reply to by Anonymous (not verified)

Randye Kaye
says:
June, 10 2011 at 5:45 am

"Hopeless." I know the feeling. Your story rings true for so many, unfortunately. This I have learned: to do what I can (and I fight like a tiger) to help my son, then let go of what I must. Sometimes there is nothing more I can do for Ben, and roads he must go down alone while I watch from afar; what I can do when this happens is take care of myself and the rest of my family. That balance is so difficult; but, we must set personal limits to protect our own sanity. My next post (coming soon) is about the debate between those who think medication is somewhat of a scam, and those of us who know that without it we might lose our loved ones to permanent institutional life.

Your son's threat to you can from his illness, not from the boy you raised and obviously love. That doesn't mean it shouldn't be heeded, however. Odd as it seems, it probably wasn't personal. Your son is still there, underneath the symptoms we hate so much.

Sherry Stover-Volker
says:
June, 17 2011 at 11:26 am

Dear Mominga, What Randye said, is so true. You have to learn not to take this disease personal, my 24 yr old son has schizoaffective & I know how incredibly hard this is & it's never ending, round the clock worry & staying on them but it's so worth it. I have met so many mentally Ill with no family support & I can understand why it happens but can't comprehend how it does, if that makes sense??? They need us & it's not their faults, this is such a debilating devasting disease that affects their brains, the very thing you need to live a productive decent life & people do say oh they need a good kick in the ass & I say would you tell a diabetic, a cancer patient, someone on dialysis that? Don't give up & hang in there if at all possible.

In reply to by Anonymous (not verified)

Randye Kaye
says:
June, 17 2011 at 2:47 pm

Thanks Sherry! True words...
Randye

In reply to by Anonymous (not verified)

Carol
says:
May, 24 2018 at 4:23 am

Oh this is so true. I get the same response from people. "why do you put up with it? kick him out" "give him to me for a month or 2, I will sort him out" "i would just have him put in an institution" . Regarding this last comment - here in South Africa, even getting the right kind of treatment is difficult, never mind putting him in an institution. We are about to move out of the city, to a country area, and the closest hospital is 2 hours away. I have made the decision to move into the country because that is what I have always dreamed of, that is my place I want to be. I plan to farm on a small scale with lavender, for the production of essential oil. I feel that working this farm may help my child. BUT the psychiatrist has now informed me that they will not be able to have him attend their outpatients or see her, because we are moving "out of the catchment area" I now feel like I am back at square one. pretty hopeless. and I was feeling so upbeat and positive about this move. thinking I could take him through once a month for the necessary session with the doctor and update meds.

rita lutzer
says:
June, 17 2011 at 4:27 pm

When your child threatens you....take it very seriously....my son at threatened my husband and I didnt think it was possible that he would really do anything and guess what he stabbed him in the head with a knife and almost stabbed me too....he ended up in a long term psych hospital for 3 yrs now and they tell me he may never get out....what amazes me is I knew he was diagnosed with schizophrenia but I never believed he would do such a thing ....ever.....he is smart, he graduated college, got a stock broker license, but the voices in his head were telling him to do terrible things and finally couldnt fight them anymore...he has been on every medication there is and still has the paranoia and delusions....this is a terrible disease and I keep blaming myself, why didnt I see it earlier, why didnt I see this coming.....but what could I have done even if i did....if they arent violent, than there is nothing you can do .....it has to happen.

In reply to by Anonymous (not verified)

Randye Kaye
says:
June, 17 2011 at 4:37 pm

Oh, Rita - I am so sorry. This illness....so awful. You could not have seen it earlier. Show me the "Baby book" that tells us what signs to look for in case your child develops a mental illness later in life...yeah. I know, It doesn't exist. As NAMI taught me, "You can't know what no one has told you." This is not your fault. But that's what we parents do -- look for what else we could have done. Part of what helps me is - eventually - letting go when I must, and letting my son's journey unfold by itself. But - I must admit - not without one hell of a fight first!

Dr Musli Ferati
says:
June, 18 2011 at 7:48 pm

The dilemma to care or to let go the child with schizophrenia presents, for disturbed parent, a Big Question in any case. By me, as professional worker in Mental Health Service, the best way to manage this serious illness is to be a kind of parent like they with mentally health children. This mean, that as parent should be a partner with your illness child in long-time treatment of its mental disorder, without any surplus careful undertaking. There are some specific demands for parent in fruitful treatment of child with schizophrenia:regular medication, instantly psychiatric intervention in aggravation of illness, and mostly important is psych-education on nature of this disease. As we know, every child has got its characteristic abilities, desires and habits that request an individual approaching of parenting. Why this statement should be exclusion for child with Schizophrenia?

In reply to by Anonymous (not verified)

Randye Kaye
says:
June, 19 2011 at 5:06 am

Dear Dr. Ferati -

I couldn't agree more. Will you be my son's psychiatrist, please? :)
In the meantime, may I quote you on this when I speak to providers or write articles about mental illness? It is so well put!
best,
Randye

Dusty
says:
June, 29 2011 at 3:18 am

My 31 year old son was born with learning disabilities and he is Bi-polar He has always had a very violent nature even as a child Once he was banging his head I think he was 10 I literally had to sit on him until he calmed down We had many episodes like that. When he was 14 I asked him to take out the trash everything was calm and he got up walked to the kitchen and began choking me My daughter his twin sister just happen to come in the house She screamed your killing her, she's turning purple She began pulling on his shirt I remember his eyes they were a Whitish color All of a sudden he snapped back to reality. I have always been afraid of my son. As a child I made sure he received all the help I could give him Even institutions
Now recently 2 years ago he became paranoid schizophrenia He is scarier than ever My other children want let him stay with them for the same reason he is violent, he bosses you in your own home he lords over you When he is not yelling and throwing a fit he sits quietly and gives everyone evil looks He is very controlling
I also have a mentally challenged son who does live with me but he is just the opposite of my other son He is like a big teddy bear.
My son with the schizophrenia has no where to go no money etc I have had him set up several times to get housing, food stamps and disability he will not do it He tells me I am just trying to control him
I want to help him, but he will not listen to anyone and I can't talk to him or he goes off I have already called the police several times in the last two weeks.
I want to help him so bad, but he want do anything he refuses and tells us we just don't want to help him He wants us to get him a lawyer for his hallucinations that he believes are real. I think he has lost all sight of any reality I told him he couldn't stay here any longer if he doesn't try to help himself He said give me some gas money and I will go back to Ft Worth
He has lost all of his friends there is no one in Ft Worth to help him he has ran everyone off I am a single mom and I have to protect myself and my other son I don't even go to sleep until he does and he stays up all night He was in my face screaming and I saw those white eyes again it scared me to death. They actually change color when he goes into a certain frame of mind. I so want to help him but I am afraid ,I have to let him go I don't know what to do. I was going to get guardianship over him but my daughter said if you do that Mom he will come after you the first chance he gets and no telling what he would do to you. I know she is right.
Oh, I know I am ranting but my heart is breaking.

In reply to by Anonymous (not verified)

Randye Kaye
says:
June, 29 2011 at 7:38 am

Oh, Dusty, what a heartbreaking story. I am so sorry that you are going through all of this. Are you getting any help and guidance? NAMI? The police? It must be so frightening to think that if you take an action things may get so much worse - and yet I'm not sure that by not taking that same action you are guaranteed that nothing will happen. There is so little control when symptoms are as active as those in your son. I am not a professional - just a mom, like you, trying her best to understand, advocate, educate, and take care of the whole family. Please seek some expert advice - and if it's not good advice, look again. Start with NAMI and/or your local helpline. My heart goes out to you.

Dusty
says:
July, 5 2011 at 2:31 am

Thank You
Well the last couple of days he has been a little better although I don't know how long that will last I had a talk with him last night again about housing, and disability, and he didn't blow up I was amazed ,I figure if I take babysteps with him first get him living close to us but not in our home that will help us all. I will definitely check out NAMI Thank you so much :)

Honey1975
says:
September, 23 2011 at 3:31 pm

As I was reading the article about the mother with the schizophrenic son, I thought about my own illness and l live with my mother. I am more depressive than manic. My mother says nothing's wrong with me, yet she says I act like a zombie. I've suffered from bipolar disorder since I was 14 years old and I receive no support from my family. I had to suffer through this whole ordeal alone. Often I suffer from panic attacks and illusions even though I'm getting better. My two sisters ailenate me and treat me unfairly.

When I think of families with mental illness I also think of my father's family. I have several cousins who suffer from depression and schizophrenia. One of my cousin is suffering with bipolar disorder with me now. His sister says his symptoms are worse than mine. He screams and hollers at people. Last year, I was so filled with anxiety so bad I used to walk through the house at night, not sleeping or having the ability to sit down. I'm 58 years old. It's embarassing having to live with your mother and having her take care of you. My Case Manager, after a suicide attempt, told my mother to control my meds. She wouldn't give them to me. She said I should wean myself off of them. When I told my Case Manager what was going on, she let me take my own meds.

My mother and sisters treat me like I suffer from Leprosy. They go places and never invite me, like they're ashamed of me. The only supportive relative I have is my father's first cousin's wife, who I stayed with when I was 18 years old. At 18 I went to stay with my father's first cousin, who was a classic case of manic depression that there ever was. I often wondered why his wife, who is so supportive of me, never attempted to get treatment for her husband. He died of cancer at 56.

I often feel guilty having to stay with my mother and having her watch me but frankly she doesn't give a damn. I decided not to have children or get married. Sometimes I blank out and exhibit outrageous behavior. If I get upset enough I might attempt murder. One of my sister's likes to start arguments with me and the first thing I thought of was stabbing her with a kniife. I told her, "You know I could kill you and not go to jail because I'm mentally ill". Daily my mother leaves me alone and never aks how I feel. She still won't admit something's wrong with me even though my father committed suicide 10 years ago, September 12.

In reply to by Anonymous (not verified)

Randye Kaye
says:
September, 23 2011 at 4:32 pm

I’m sorry to hear about your situation and learn that your family cannot be more supportive in the way you would like them to be. Everyone wants to be loved, understood and accepted for who they are. It is also difficult for parents and other family members who must deal with their own issues when confronting mental illness in the family. NAMI has a wonderful “Family to Family” program in many communities around the country to help family members with education and support. Here is a link to more information on that: http://nami.org/Template.cfm?Section=Family-to-Family&lstid=605. At some point, maybe your family members would consider taking the course. Besides the mental health forums and chat here on HealthyPlace, there are also NAMI face-to-face support groups for people with mental illness. Hopefully there is one near where you live - http://www.nami.org/Template.cfm?Section=Your_Local_NAMI&Template=/… .

in the meantime, NAMI also has peer-to-peer programs that may be of help to you - or is there a clubhouse in your area? If your family can't support you the way you would like, there is support you can get elsewhere

I hope this helps.
Randye

Jacqueline Freeland
says:
October, 17 2011 at 5:59 pm

My name is Jackie. I deal with a different look on life. Ever since I was little, I could here voices in my head, get highly paranoid, agitated, and violent. I just got diagnosed 3 months ago with schizophrenia and about 8 months ago I had my first children, a beautiful set of twin girls. Now more than ever my paranoia is getting worse. I face the daily struggles of fear against myself with my children. I am so scared that I will get angry and hurt them. I know I won't but it still worries me. I take medicine for it and the medicine may make my feelings of agitation and the violence go away, but it doesn't stop the voices or the paranoia go away.

I am sorry that you go through what you go through, but even though people think we have a choice on the way we act or behave, but we really don't. Think about it from his point a view. Try to find what triggers his behavior and try to avoid those triggers.

In reply to by Anonymous (not verified)

Randye Kaye
says:
October, 18 2011 at 3:43 am

Hi Jackie. Thanks so much for taking the time to share your story, and your point of view. It does help to try and see it from your perspective. Many tell me that the meds do help them manage the impact of the voices they hear, but that they are still there. This must be so difficult to live with. I can only admire your insight and your courage, and hope (along with you, I imagine), that research continues so that there are better treatments until you get the peace, and respect, you deserve. Congrats on those beautiful babies! Randye

Lynne Oakes
says:
December, 9 2011 at 9:26 am

My son is 28 and was diagnosed with schizophrenia at 18, he has spent the last 10 years of his life in hospital, at first he was not sectioned and used to come and go which iterupted his treatment, he was finally sectioned when he was about 20. About two years ago i was told he was treatment resistant, he responded best when on Chlozapine, but has had two bad reactions so can no longer have this treatment. During all this my son maintains he is not ill and that myself and the hospital staff are pltting against him to keep him in hospital. I see him about once a month (60 mile round trip) and speak to him on the phone. At first I used to see him more often and speak to him most days, this has become very difficult to to his increasing frustration and the fact that he blames me for him being in hospital. I cannot give him my home phone number or he would ring constantly throughout the day and night, he has my mobile number and rings me usually about 20 to 30 times a day (I have to manage his calls so have to have my phone on silent during work hours) this breaks my heart, but keeping him at arms length is the only way I can be of any use to him at all, he has little or no support from his fathers side of the family (we have been divorced since my son was 8). I am his only regular contact with family and I feel constantly under a huge amount of pressure because of this. I love my son but feel helpless and unable to support him. I know he feels lonely and lost in hospital and he has said things over the years that make me worry that his care is "questionable". He has had several consultants over the years, many named nurses, and seen other patients come and go, his most recent consultant has come to a point in his treatment where there is no more treatment that can be offered which hasn't been tried on him before, she has suggested that she would now like to try referring him to an ABI (aquired brain injury) consultant for a second opinion (in case there is any alternative treatment which could be given which isn't currently available with in a secure mental health environment). I have no idea where this will lead and what my son's long term prospects are, i just cannot see a future for him and although he is fortunate to have the NHS to fall back on his quality of life is still very poor. I have a visit booked with him tomorrw which I am dreading as I know that it will (as always) break my heart, he will be loving and happy to see me for the first five minutes, then he will get frustrated and angry that he can't come home with me so will start to shout and swear at me and then tell me to go, I'll drive home with tears in my eyes and curse a god whom I do not beleive in for allowing this to happen to my son and others like him, and year after year this continues in the same way, I would rather my son be physically handicapped, I'd happily push him around for the rest of his life in a wheelchair and deal with everything this would bring, at least he would be able to live at home and people wouldn't judge him.

In reply to by Anonymous (not verified)

Randye Kaye
says:
December, 9 2011 at 10:37 am

Lynne,
Oh my - I can truly understand so many of your feelings. I know that our situations are different because psychiatric care is so different in the UK from the US, but a mother's heart is a mother's heart. I speak about the same raw, honest and painful feelings in "Ben Behind His Voices" - and how I worked through them -and I think if you read it it might make you feel a little less alone in your emotions. Also "Henry's Demons" is a good read from the UK point of view. Thank you for the courage to share your story here.
Randye

In reply to by Anonymous (not verified)

amber
says:
June, 29 2018 at 10:15 am

Lynne,
I read this and my heart breaks for you. My son has been diagnosed with paranoid schizophrenia and for over a year and a half it has been total chaos. He has been in and out of hospitals and is currently in one. He refuses to believe he is sick and nothing seems to be working. I too, would rather he be handicap and not feel the judgement and lack of support that I have felt so far. Lots of people act like he is some type of criminal because of his illness. I would love to be able to support each other.

jill
says:
March, 25 2012 at 9:28 am

I am so glad I found you maybe I as the parent of a 22 year old son who in the past 2 years was dianogised a paronoid schoizophrenic iam realizing after reading so manyother stories that maybe my son is doing pretty good in spite of the fact most days i feel his not

In reply to by Anonymous (not verified)

Angela
says:
May, 26 2018 at 1:13 pm

Hi gill im new to this but ive been reading other mothers blogs and i feel sad every time i open my eyes in the morning as all i do is worry how my 25 yr old son is dealing with his day . He also has schoizophrenia but i feel the same is he coping better than i think ? Ive had 8 yrs of seeing him hospitalized

Sandi
says:
May, 14 2012 at 2:34 am

I have a 26 year old schizoprenic.I can not get help from anyone. I have asked the Marchman Center, SS, family, and his father.I am disabled and have a hard time just taking care of myself. The biggest problem is that he is noncomplient and says nothing is wrong with him and becomes very angry if I try to talk to him at all.He requires constant checking after because he leaves the stove on, water running or the doors open. He will not pick up after himself.I try but he refuses to talk to me at all. He is verbally abusive. I am trying to support both of us on my disability. Do you have any suggestions?

In reply to by Anonymous (not verified)

Randye Kaye
says:
May, 14 2012 at 2:52 am

Hi Sandi -

have you called your local NAMI affiliate? They often have some suggestions as to local services that may help. I agree it is a very long wait until our loved ones are "sick enough" to get help - it was for us. While sometimes letting go is the only ultimate options, most of us fight like tigers until we get to that point - and it is a fluid conclusion (we fluctuate daily sometimes between knowing we must "let go and let God" and stepping in to help.

Have you read the book <a href="https://www.createspace.com/3697560&quot; rel="nofollow">Defying Mental Illness</a>? While I have lots of resources in my book, this one was released after mine and so is not yet on the list. There are lots of practical suggestions for navigating the system.

One sad thing to realize is that we cannot "force" our loved ones to take their medications. My son takes his, but he still doesn't think he has to. Have you read I am Not Sick I Don't Need Help? This and other helpful reads are pinned on my <a href="http://pinterest.com/randyekaye/great-reads-about-mental-illness-and-he…; rel="nofollow">Great Reads about Mental Illness </a>Board.

Also, Healthy Place has some terrific articles on these topics...and so does NAMI. Family-to-Family taught me so much - is there a way you can get to one of these classes? I learned here how to set limits on my son's behavior and take care of myself - but none of that made any sense to me until I understood his illness. I highly recommend it.

I hope some of this helps. So many of us are in this boat, and feel like no one will help. that's why I wrote my book after my son finally got into a recovery phase - to give some realistic hope as well as share the frustrations.

My heart goes out to you. It is so difficult, I know. Hang in there, and ask for help. FYI, at one point I had to make my son homeless. It was not easy, but it helped him grow up - and forced the "system" to get him a bed elsewhere. But it is a risk - as letting go always is.

Wendy McGhee
says:
June, 9 2012 at 5:23 am

I have a 22 year old son who was diagnosed with Schizophrenia 2 years ago. He was sent to prison for 22 months for a drunk diving accident. He went off his meds and hears voices all the time. He is being treated at a hospital facility, finally. He will be released from prison in two months. How do I help him with his illness and the getting out of prison thing. Everyone sounds so hopeless.

In reply to by Anonymous (not verified)

Randye Kaye
says:
June, 9 2012 at 5:28 am

Wendy, I"m going to recommend a great resource for you. It's called <em>Defying Mental Illness</em>, and has detailed info about "the system" and lots of legalities. My book (<em>Ben Behind His Voices</em>) is more about emotional steps, though I do list resources as the story unfolds. It sounds like you need some really practical advice. This is NOT hopeless, though it certaily is challenging. You cannot totally solve this, alas, but there are steps you can take to <em>help</em>. Also read, if you haven't already, <em>I am Not Sick I Don't Need Help</em> - and see if your local NAMI chapter has resources, education and info.

It's great that your son is finally getting treatment. It's a start.
best,
Randye

Dan
says:
July, 1 2012 at 10:56 pm

I am mentally ill with bipolar 1 and Anxiety disorder. Everyone in my family has some sort of personality disorder but they all make me out to be the only person with a mental illness and the black sheep because they all have jobs and are secure. Everyone imposes some kind of rule on me and if I break the rule they all feel justified by instantly hurting me as much as possible. My sister screams at me violently and throws me out of the house. My brother will attack with his fists if I offend him or his friends. My mom calls the cops on me and the cops hurt me (broke my wrist, threatened to kick my teeth out, locked me in a cold cell for two days alone for nothing) and my dad abandons me in bad neighborhoods or kicks me out of the house onto the street. People robbed me when I was all alone, people tried to kill me three different times but I escaped on foot, and there were many, many nights I was homeless and vulnerable to being attacked or worse on the streets. In the hospitals I had people try to rape me in my sleep and I was assaulted six times and each time either strapped down for a day, moved to a violent part of the hospital, or kicked out onto the street when I never hurt anyone when I was attacked. I had a doctor lie to the police about me screaming at him and I was jailed for a month for a crime I didn't commit. I had a nurse in an ER touch me inappropriately. I had landlords rip me off and take all my stuff to the dumps three different times. People do whatever they want to me and nobody cares because I'm "mental" and you all wonder, all you distressed caregivers and parents, why people with mental illness want to commit suicide every waking moment? Life is a horrible nightmare to some degree but I'm a fighter and recognize my illness. I got an education and am learning how to be successful besides all the horrible things that have happened to me. It was not my fault that I have a disorder, a disease, I didn't choose it but many people punished me for being this way. I have no love for life, it's hard to wake-up everyday, it's hard to smile anymore. I just get through it all hoping for the best atleast I know what to expect. I'm going to move away far away from people that hurt and abandon me and hopefully have a good life or not, who really knows.

In reply to by Anonymous (not verified)

Randye Kaye
says:
July, 2 2012 at 4:20 am

Hello Dan. I’m sorry to hear you’ve had such a tough time and that your family has been so unsupportive. Still, amazingly, I sense that you are trying to do the best you can for yourself. You are absolutely right that having a mental illness is not your fault. From your note, I imagine financial resources are tight. You might try calling your county social services, county mental health agency and local United Way to see if they can assist with diagnosis, treatment or support services or lead you in the right direction. Take care, Randye.

wantingtohelp
says:
July, 12 2012 at 10:15 am

Our 27 year old daughter has been diagnosed with schizoeffecta disorder. She has been hospitalized three times but is taking her meds by injection from the community services board every two weeks, so she is not psychotic. She barely goes to work, her room is a wreck, clothes, shoes, mail, money thrown about the room and she is smoking weed every day. She has gained about 25 pounds and sleeps most days, then goes out to smoke every night until late and comes home around 2-3 a.m. Usually when she is home she is sleep or texting on her phone. She rarely talks with us and does not really have a relationship with our 24 year old daughter (her sister). I go to NAMI meetings, but don't feel like they really give me any concrete approaches to take. She will have times when she says she will make an attempt to get healthy, i.e., exercise, go to work on time, interact with us and her extended family. But she does not follow up. I want to ask her to move out because it is so painful and stressful for me to see her just give up, but I am afraid of what she may do on her own. She was a loving, extremely intelligent (full scholarships to college and law school..she quit lawschool after two years)focused young person and now she is someone totally opposite. I just don't know what's best to do.

Scott
says:
July, 13 2012 at 12:34 am

My son (35) has it . There is no life for him and no help for us. Just we are sorry.. I have spent all I have trying to help . It's a never ending fight .you can,t win.l

In reply to by Anonymous (not verified)

Randye Kaye
says:
July, 13 2012 at 4:09 am

Dear Scott and "wanting to help",

I am so sorry for the pain you are going through. I know it all too well, and I don't pretend for one minute that this isn't a horrible, heartbreaking, life-stealing illness. One of the reasons I am so grateful for Ben's current life is that I know how fragile it is.

There have been times in the past (and, though I hope not, there may be times in the future), when I feared I had lost Ben forever. At those times, my only solace was the knowledge that I had done everything I could and that somehow, someday, Ben's soul might meet mine in some other place, and he would would acknowledge my love and that he knew I had tried my best. Sad but true - and of some comfort at that time.

At other times, when things looked really bleak, there always came a point when I knew I had done everything in my power for the moment, and that there were things I had no control over - and it was then that I had to let go of that dream of control, what I've heard described as "let go and let God" (whatever that means to each of us). At those times, the only decision left to me was to take care of myself and the rest of my family, and to try to find happiness as best we could.

Self-care is not easy, especially when it feels like we are "abandoning" someone we love for a time - but sometimes it is the only choice that can comfort us. When a child with mental illness is living in our home, that can translate to setting realistic limits (even when Ben was off meds, he knew the rules like "no smoking in the house") for the good of the whole family. <strong>Realistic</strong> is the key word here, and education helped me to realize what was realistic. (recommended books, NAMI, Family-to-Family, informative online communities and websites).

And, always, there is letting go of old dreams. As I write in my book, my hopes and plans for Ben's life have had to change. I remain so grateful that he is working - but if I were to compare it to the hopes I'd had for him ten years ago, his minimum-wage job might have looked like failure. I choose to see it as success - and it took eight long years to get there, during which time his main structure was doing his chores in his group home, attending AA meetings, and occasionally spending a day in a Clubhouse. Learning to see those steps as successes did help.

Thank you for writing. My heart is with you. NAMI does not always provide <em>answers </em>at support groups, but it can provide <em>community </em>and also lead you to other ideas for solutions. I hope the blogs here at Healthy Place are of some help as well, and the stories that others share. That is why I wrote my book Ben Behind His Voices, and why I continue to blog here. Hang in there, and remember the Serenity Prayer for some comfort...
"God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference."
Though I sure do wish I had a magic wand for us all.
best,
Randye

In reply to by Anonymous (not verified)

pam
says:
May, 18 2018 at 3:20 pm

I agree. My son is 30. He is homeless, delusional, and angry. I cannot fight to help him anymore. We have still not gotten a diagnosis due to HIPA. One nurse told me the file said schizophrenia.

wantingtohelp
says:
July, 16 2012 at 9:42 am

Thank you for your resonse Randye. Today has been pretty rough...my daughter promised to go to work, but this morning decided to go "hang out" with her friends..which means smoke weed. Sometimes I feel like she's just not putting up much of a fight against this illness...like she's bought into it so she doesn't have to do the hard work. I told her I am tired of the broken promises and now I feel terrible because she won't answer my calls or texts...this is such a rollercoaster ride and I grieve for her..I miss her so much.

FML
says:
July, 18 2012 at 6:57 am

dear wantingtohelp, i relate to you oh so well. i have a sister 27 as well, schizophrenic. The amt of torture she she has put me(her younger sister) and my mom &amp; dad thru cannot be described. From calling the police to yelling vulgarities to us and strangers to throwing eggs outside the windows to getting tattoos to trying to stab me and my mom. She lost all her jobs and demands my parents to supply her the money. I just dont know where to begin.

We went to see a psychiatrist n she is now on meds. The doc says she gotta take it for the rest of her life. My family is broken. happiness has been lost. The meds side effects are another worry.
I just feel like committing suicide every now and then.

In reply to by Anonymous (not verified)

Randye Kaye
says:
July, 18 2012 at 11:32 am

dear FML, I am so sorry for your pain. I hope that by reading some of the blogs and comments here, you are reminded that you are not alone in your pain. Sometimes the only thing you can do is take care of yourself. If there is nothing you can do for your sister right now (and there may not be, at the moment), what can you do for yourself? I hope that you wil reach out to NAMI and other support groups to get through this difficult time. You can get through this, tho the pain of losing the sibling you knew and still love is so hard, I know. Please talk to someone about how you are feeling, and know this: you are not alone!
best,
Randye Kaye

wantingtohelp
says:
July, 24 2012 at 5:49 am

I reached out to my daughter's therapy team becuase I can see all the red flags popping up...my daughter does not go to work (not sure if she still has a job) and I was informed that she has missed numerous therapy sessions and her last appointment for her shot (resperdol). She told her therapist that she has been going to work everyday and has NOT told them she is smoking weed everyday. I want to talk to her, but am afraid it will push her father away. yet it freightens me that she will end up back in the hospital (she has no insurance and the hopsital is for indigent patients) I am praying the serenty prayer and believe I cannot just sit by and wait.

Bonnieleckie
says:
August, 1 2012 at 8:25 am

I have a daughter thstnis 31 years old. Has struggled for the last six years. Because of the hippa laws and laws to protect patient rights our family is up in arms. Our daughter has been in and out of hospitals, she has doctor shopped and hopped to get the meds she wants, this last time she overdosed on haldol and wound up hack g a reaction thet she said "allergic reaction" but tomus an allergic reaction is taking the prescribed dose. Not more than the bottle says. She was admitted and was in the psych ward, once again as she has had 7 other hospitalizations, only to work her magic to be discharged on her own accord. It'd frustrating to us that she won't take a y medication before she googles it and denies she has schitzophrenia, has turned our family upset down with worry. We are doing the tough love now and are fearful of get g the call that we need to make Fu wrap arrangements with you. We know we can't help someone that refuses help or think they need help. Our daughter will get a job in a different state and works long enough to get fired and collect I employment. she's very bright and manipulative. She hears voices, thinks car aentenas are taping her, thinks everyone will take her money, everyone is against her and everyone has a conspiracy. twice she went to the police that her father and I were taping her in the shower only to have the police see that she thought the shower head was a video camera. She thinks it's all of us and she doesn't have any problem.how do we get our daughter committed long enough to get to the root of the problem?? We are so sad and frustrated. any suggestions? A parent that will go though hoops and loops for her child.

In reply to by Anonymous (not verified)

Randye Kaye
says:
August, 2 2012 at 9:03 am

I know - it is so heartbreaking, and so difficult. How I wish I had magical answers for you. Have you reached out to your local NAMI affiliate for support? Again, no magical answers, but you may not feel so alone. There have been times, honestly, when I simply have done all I can, then know I must step back and take care of the rest of my family (including myself).

How to know what steps you <em>can</em> take? And how to let go when you need to? Taking NAMI's <strong>Family-to Family</strong> is a great step - so are books like <em>Defying Mental illness, I am Not Sick Don't Need Help, When Someone You Love Has a Mentall Illness</em>, and<em> Ben Behind His Voices</em>. All are on Amazon and in bookstores.

I hope that some of these suggestions may help. We all do our best and it just feel like enough. Hang in there and best of luck to you all -
Randye

Marjie
says:
August, 2 2012 at 8:54 am

I have a 23year old daughter who sounds similar in some ways to wanting to help's daughter. She also alternates between being positive - exercising, going to classes etc., and deep depression. It breaks my heart because she has no friends at all. She seems to make friends but she has always had problems socially plus she will go into her own little world and start laughing to herself. Her room is a disaster - there is no room to walk in it and she hasn't slept in her bedroom for years. Years ago, she told me she had claustrophobia and said could she just sleep on the sofa for a short time (she has been sleeping there ever since). She has been in hospital three times over the years and was diagnosed with paranoid schizophrenia and bi-polar disorder but she says there is nothing wrong with her and she won't take medication. The Dr. at the last hospital told her if she didn't take her medication that I would eventually have no alternative but to make her leave the house. The threat worked for a time but she knows I wouldn't be able to do that to her.
I first thought her behavior was because I had spoiled her - she has always been very strong-willed and I gave in to her to avoid her throwing a temper tantrum (because that in turn would also mean my husband would throw an even bigger tantrum). As her temper fits became worse I also thought that it might just be just a hormone imbalance. When she began talking to herself and hitting herself I was devastated and had to call 911 because I couldn't get her to stop. Now it is five years later and life with my daughter is like a roller-coaster. There are times when she can be thoughtful and sweet but mostly she is verbally abusive to myself and her brothers and I just don't know what to do - I know that she will never get herself better without medication.
Over the last few weeks she has been getting worse again and also panicking that she has everything wrong with her, from having a seizure/heart attack/head tumor/ worm inside her to severe allergy to something. She has been refusing to eat or drink properly and called 911 twice. The first time the paramedics said they thought it was an anxiety attack and we took her to the emergency room to have her checked as well(the Dr. there said the same thing). She began asking me every day to take her to the emergency room so I made her an appointment with her GP and he said it was anxiety and to visit her psychiatrist. Then she called 911 when i went to the grocery store and i came back to find they had taken her in the ambulance to the hospital. When i got there the Dr. was quite firm with her and said she needed to be responsible and also to visit her psychiatrist. Last night she went in for a shower at 7:00p.m. and we eventually managed to turn off the water at the main at midnight. She wouldn't come out and when I tried to talk to her through the door she just shouted abuse back. It is noon of the next day and she is still in the bathroom laughing to herself. I dread the thought that I'm going to end up having to call for emergency services again but i don't know what else to do.

In reply to by Anonymous (not verified)

Randye Kaye
says:
August, 2 2012 at 9:09 am

oh, my Marjie -

I guess we could each write a book of our own! My heart goes out to you as well. I have been where you are, and the hardest (and, ultimately, best for all) thing I had to do was to declare my son Ben "homeless" so that he would qualify for a bed in a group home. I found that his living with us was not only helping his recovery - it was actually hurting us <em>all</em>. Ben lived in a group home for eight years, while gaining some independence - for himself, and especially <em>from me</em>. We had to, with safeties in place, give him his life back. Not easy, and not without risk. But I think it was a very important part of his recovery process, to have a different family structure for those years.

I refer you to the resources I suggested in my last reply, and hope with all my heart that they may be of some help.
best,
Randye

Marjie
says:
August, 2 2012 at 2:04 pm

Thank you Randye,
I did buy the book I am not sick I don't need help and am reading through it.
I have heard other people refer to group homes and it sounds like a wonderful idea. My daughter behaves very differently when other people are involved, I think she has too much emotional control over us (especially me). I don't know if group homes are a possibility (we live in California) but I have just contacted NAMI by e-mail and the lady who replied suggested I call and ask for information about the family to family.

Bonnieleckie
says:
August, 12 2012 at 4:03 pm

Marjie,
We are going through the same thing. NAMI is really resourceful. We had to do the tough love. I highly recommend the movie A BEAUTIFUL MIND. It's a very powerful movie about schizophrenia, made a lot of sense to us, showing the mind and how they live day to day, what goes through their minds. I cried during most of the movie but it opened up my eyes. I pray for my daughter each and every day and feel very helpless not being able to help someone that doesn't want the help or feel they need it, but someday, somehow, she winds ip getting by and she will call upon us again when she feels she is in trouble.
Sad thing is our daughter took too much of her haldol and wound p swelling,

Bonnieleckie
says:
August, 12 2012 at 4:07 pm

The hospital kept her for five days only to find out in the morning of day six our daughter checked herself out. If only we could keep our daughter in the hospital for longer than 5 days to get the proper treatment. She won't accept her diagnosis. How can we get her committed, being 31 years old, hippa laws and she refuses to sign s release to us? Thats why we had to let her go. We pray she comes for help before something bad happens, she is a danger to herself as she makes poor decisions. How can the hospital release her when she overdosed her medication? It's very hard as a parent with an older child.

Marjie
says:
August, 14 2012 at 9:22 am

Thank you Randye and Bonnieleckie,
I have contacted a few people trying to find out if there are any options open to me to help my daughter. I have ordered the books you suggested Randye and I have talked to a very helpful and concerned lady at NAMI. I am going to my first support group meeting this evening.
My daughter has gotten progressively worse and will not get showered or go outside but just lies on the sofa. She only answers me occasionally when I talk to her and spends most of the day either solemnly examining her hands or laughing out loud. I feel like crying (as I have done so many times in the past) but I feel as though I have to change

Marjie
says:
August, 14 2012 at 9:29 am

Thank you Randye and Bonnieleckie,
I have contacted a few people trying to find out if there are any options open to me to help my daughter. I have ordered the books you suggested Randye and I have talked to a very helpful and concerned lady at NAMI. I am going to my first support group meeting this evening.
My daughter has gotten progressively worse and will not get showered or go outside but just lies on the sofa. She only answers me occasionally when I talk to her and spends most of the day either solemnly examining her hands or laughing out loud. I feel like crying (as I have done so many times in the past) but I know that I have to find some kind of solution that works this time to help my daughter. I have been told the only way to have a say in getting my daughter to get help is to get power of attorney but a friend told me she is concerned that then I will be liable for all my daughters financial responsibilities.

Denise
says:
August, 18 2012 at 1:45 pm

Too tired to write a lot but I just wanted to say how much I can relate to all your situations... My son is back in hospital again but i'm really not happy with the care he is receiving, really feel low about everything that's going on right now - it's all just never ending &amp; I feel like i'm going around in circles.

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