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Concerned Parent? or Heartless Dictator Over Schizophrenia?

August 1, 2014 Randye Kaye

Two things happened last month that stirred me to revisit an often-examined question:

Am I too involved in my adult son's life (Ben has schizophrenia.)? Have I "stolen his manhood and his rights" by insisting on treatment for his schizophrenia?

One reminder came in the form of a reader's book review on Amazon.com for Ben Behind His Voices, calling it a "Testament to Abuse of Power and Parental Authority," the only one-star review in a sea of 5-star praise and gratitude. Clearly, a man with an agenda, so I didn't take it too personally, but this is not the first time I've been called an over-involved parent. On the other hand, I've also been criticized by others for not "stopping" Ben from dropping out of high school, for "allowing" my son a period of homelessness in Idaho and "letting him fail" when he gained and then lost five different jobs after he returned.

"Forced" to Take Schizophrenia Medications

And then there is the question of "forcing" Ben to take schizophrenia medications to help restore balance to his brain. The second reminder came from a voice student of mine, who shared how well his son with schizophrenia was doing without meds, having "learned to recognize the voices (auditory hallucinations) and deal with them" instead. Of course, that's wonderful. Some people, I understand, can do that -- but often it takes all of their energy just to keep those voices at bay (read: Hearing the Voices of Schizophrenia). And then there are those, like Be, who cannot, in a million years, manage the full-time job of keeping his inner thoughts (or voices, or whatever they are) quiet enough so that he can attend to the outside world.

Elyn Saks clearly outlines her unsuccessful attempts to get off schizophrenia meds in her memoir, The Center Cannot Hold. In our family, we have seen, all too frighteningly, what Ben's life becomes when he doesn't take his medication; wildly wandering, constantly mumbling, lost in his own world, relentlessly pacing, capable of lashing out. He is lost to us then and, I believe, to himself.

I Insist My Son Maintain His Schizophrenia Treatment Regimen

Am I a dictator for insisting my adult son with schizophrenia take medications? Some who advocate for patient’s rights call me just that. Here’s how I view it.

But with the treatment for schizophrenia we "insist upon?" He is working at a job he loves, is finally having a social life with some friends who enjoy his company, is studying at college part-time, and enjoys riding his bicycle, taking walks, and even cooking. He lives with us now, which is the parenting contract lasting a lot longer than we'd ever planned. But he has a life. He tells us how happy he is. But he does not ever credit the medication for his success. He needs to feel he is "totally responsible"; which he is, of course. His ambition, personality, charm, intelligence are what has helped him to succeed. But without the treatment, his illness clouds those wonderful qualities. Treatment has allowed him to shine through. Ben is no longer "behind" his voices all the time.

Responsibilities of Parenting an Adult Child with Mental Illness

We applaud his independence and hope he has a car and home of his own someday. We'd like our lives back, too, believe me, but not at the expense of Ben's life. And right now, being part of the family is something he loves. He had his own apartment once, a recipe for disaster though we'd had high hopes.

So, dictator Mom makes sure he takes his medications for schizophrenia and does his chores. We also provide rides to and from work when we can; which is most of the time (one of the reasons I often work from home). If we can't, we trust him to figure it out. We are parenting the way many parent adolescents: let the rope out, carefully, a step at a time.

Some, including the reader-reviewer above, advocate for "patient's rights" to refuse treatment for mental illness. We advocate for Ben's right to have a life, to rebuild his future. He is happy, adores his job, participates in activities with family and friends - and it can all fall apart if he stops treatment. We have seen that happen at least ten times in the past, and are happy to be called "dictators" if it means that Ben will be in the world, able to have a life.

It's his right.

You can also find Randye Kaye on Google+, Facebook and Twitter.

APA Reference
Kaye, R. (2014, August 1). Concerned Parent? or Heartless Dictator Over Schizophrenia?, HealthyPlace. Retrieved on 2020, October 21 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2014/08/concerned-parent-or-heartless-dictator-over-schizophrenia



Author: Randye Kaye

Doro
July, 23 2015 at 4:49 pm

Here is my story: my son - now 38 - developed acute psychosis (schizophrenia) when he was 20. I forced him to get treatment in a closed psychiatric hospital in Germany. It was a very traumatic time for him, but worked so far, that - after 6 weeks - he agreed to atypic neuroleptica (zyprexa), longtime-drugs which are milder in sideeffects than the ones used in acute situations. He stayed with this medication for 12 years, was able to finish university as an architect, won student prices on the way. But all this time he seemed without joy, always depressed, always tired and he longed for company, but had libido problems. He understood he would get no other chance to become an architect (his dream) if he would quit medication. So he complied. Lived by himself all the while.
In those years when my son was studying, I met my now-
husband - American - and left with him to live in Japan.
My son visited us there, all was so far so good. After he graduated, he decided to take no medication anymore.
He did not tell me right away, I learned it over time because he changed gradually. Now it is so, that sometimes he seems
totally normal, even happier and more energetic than in his medication years, but in between he is full-blown psychotic and is talking like a broken record, relentlessly. He lost his
apartment and lived a year as a homeless, frightened relatives with visits and destroyed things in crazy manner. But he is amazingly able to survive and to help himself, seems very strong. Recently he was able to settle in again, is meeting the requirements for state support , this is little money, but he has not to stay hungry. He is sad about his loneliness, but is not depressed at all like he was under medication. Most of the time he is very confident that someday he will make his dream come true.
Of course for me it's very hard to see from far away this desperate and dangereous way of his life. As his mother I do have the option to intervene by applying for supervision and care through german authorities. It would give me more
insight in his life too in times when he decides to play dead man with me and I am so worried about him that I hardly can sleep. But while thinking about this option it became clear to me that I would only do it, because of my own peace of mind. It would do no good to him. I want not to take his freedom and dignity away by breaking his will. I remember very well he was not happy under the meds (only functional halfway), now he is crazy sometimes, but full of energy and life. I cannot deny him my respect for being what he decided (still under medication, not in the hole of acute mental illness!) to be.
My sisters in Germany find only harsh words for me, being
a bad, selfish mother and do not talk anymore to me.
Some people see only black and white. But although here are many shades in between. Always be careful...

Emm
June, 24 2015 at 12:43 pm

I am the mother of a wonderful beautiful son that's just been diagnosed with Paranoid Schizophrenia..
My world as I have known it has been changed forever..the last 8 months he has been hospitalized 4 times..in those months he's been in 5 different meds that react horrible with him..he has destroyed my car, put dents in our refrigerator, knocked door facings off the wall..ran away 4 times. He believes that demons are trying to posses his body..we've found him in the garage trying to knock his eye teeth out with a chisel believing they were vampire fangs..my 70 yr old mother tries to keep him while I work..she is not able..I've lost work due to the fact he cannot be left alone..my step father has said he will divorce her if my son goes back there, my spouse says I have to go if I bring him back here..we are at the end of our rope..I am bipolar 1 and have kept myself stabilized with diet, exercise and meditation but I cannot control it with this stress..everywhere I call or turn is another blocked ave..
My mother and I do not know how much more we can take..everyone around us says just drop him off somewhere..but that is just something I'm NOT going to do..

Virginia Jones
October, 6 2014 at 8:33 am

I just found out that my 24 year old son has schizoaffective, 6 months ago. So our journey has just began. Of course the signs started showing up 3 years ago and although I "felt" that it was some kind of mental issue, everyone else "knew" that it had to be drugs. Well, it turned out that a mother's intuition was right. Anyway, this has been a hard blow on my family. I am reading everything that I can get my hands on to learn about this illness. My husband just relies on me to get educated. But when I try to explain the symptoms he doesn't seem to be buying it.
He also says that he is not going to be "raising" our son until the age of 50. As a mother, I am willing to help my son as long as needed. I want him to take his meds, get a job, have his own house, meet a girl, live his life. But if that is not in the cards, then I am willing to help him as much as possible.
I admire what you are doing for your son. And I hope that I will be able to be as strong as you. Personally I would be willing to "force" my son to take his meds because I know that if he was aware of his illness, he would take the meds himself, no problem.

Karla
September, 16 2014 at 10:46 pm

I am a schizoaffective adult and I cannot express how grateful I am for my mom every day, how lucky I am to have her. Thank god for my mom. Even when I fight her about my meds, even when The days when I am sure she is part of plots against me. I have my own apartment and a job (at present) but I am not able to function solely/independently like an average 32 year old. It is hard, apparently, for people outside such a situation to understand. Please excuse my language but SCREW them and their easy, casual judgments of amazing caregivers like you and like my mother. I am not garbage, and neither is Ben. (I read your book incidentally and it was wonderful, so was Elyn Saks' book.) Anyway yeah I can say for sure that it is not a question of being pushed out of the nest and pulling oneself up by ones bootstraps for the severely mentally ill. You are awesome, stay strong, I send you all my positive vibes and give Ben my best.

Randye Kaye
August, 7 2014 at 3:33 am

Thanks so much for your comments. It shows the true spectrum of what we go through as we each learn to cope with mental illness in various forms, in ourselves or in someone we love. Each case is different, and in ours the benefits of the medication for Ben far outweighs the drawbacks . With that said, what Amy is doing with and for her son is what we do as well. Reducing meds simply does not work for Ben. We have seen possible deadly effects form reducting the dosage, including life-threatening choices to himself, and the fear that it might affects others as well.
I agree that recovery takes great courage, strength, knowledge, and more, and I hope that someday Ben can manage his severe schizophrenia himself. Until that time, we will do our part. "Recovery" includes things like purpose, structure, love, community...but none of that seems to hold with Ben unless he is balanced with his medication. With treatment, he is successfully working, studying, and even beginning to build a social life.
We can see various situations in these comments, and thanks again so much for your poignant and heartfelt responses. We can all respect each other, allow for individual choices, and encourage each other to self care as well.
D, you are right...we can't "force" medication. In our house, we require it, encourage it, and have set those difficult limits with love and even humor. But not gonna lie... The twice daily "meds time" is not always easy. But the results are worth it- for us.

Frances Kendall
August, 6 2014 at 10:43 pm

My daughter is a 34 year old schizophrenic. She has strong negative/deficit symptoms but has never experienced a complete psychotic break. She refuses to see doctors or take meds. She is very willful and able to live alone with our financial support. She lives in her own world and is emaciated. With lack of evidence that antipsychotics would help her negative symptoms, we are not willing to betray her trust by having her forcibly institutionalised. I now am working on changing my thoughts from fear that she will not survive to "I honour Milly and her journey and my positive energy gives her strength and support" or "Milly is well and strong" with a visualization of her that way.

Kristy
August, 6 2014 at 4:29 pm

I have been both a Carer and a Consumer. I know how hard it is when someone you love has schizophrenia or has attempted suicide with depression. Seeing my loved ones suffer was much harder then being acutely ill with bipolar 1 myself. If rather be hospitalized then see those I love hospitalized. I disagree there is a shallow end to the mental health pool commented by the above person. We are all dealing with reality if life and death. I worry more about my partners safety who has clinical depression then my mothers.
I have however seen people I think are dominated by their Carers such as a young man who told us he could not have children because he didn't want to pass down his illness so he had never had a girlfriend which was fine if that was his choice, but it seemed to be the view of his mother . He was nearly thirty and lived with his mother and grandmother who he appeared to do most of the caring for.
I don't know when the choice to protect our loved ones actually creates harm. I have failed many times and some people say my parents should have stopped me trying to become a primary teacher or from getting a fifteen grand business loan.
There is a dignity of risk and I think there is often a soft bigotry of low expectations.
However you encourage your son to have a job he loves which must allow him some anominiity, and you want him to have some indepenndance. That doesn't seem controlling to me. I hope he is the one who chose his friends for instance.
Ultimately I think that the fact you think about this question means you consider his right to self determination . That is more then some Carers do. By reflecting on your actions I think you and your son will make good choices together.

Amy Kerr
August, 6 2014 at 1:12 pm

For those of you in the shallow end of the pool of mental illness (Bipolar, scizoeffective, and other disorders you are cognizant of) Feel very blessed that you can even express yourself in word today. For there are people, like my adult son, with paranoid scizophrenia and Anosognosia, that can not do this. We, the loving parents, who would have chosen a thousand other paths for our loved ones, wish you would work with us instead of against us. Be compassionate for your own illness is one genome away from the loss of awareness of your illness to the loss of all your cognitive functions. Ive devoted my life to my son ,as a mother should. Just as this mother is doing. My son lives with me in a supportive loving home, we keep stressors to minimum, we eat nutritional meals, we talk about, we listen , we empathize, we agree, and we plan. We are all in this together, and there for the grace of God go anyone of us. Out of respect and compassion support each other in our journeys.

Andrea
August, 6 2014 at 9:15 am

I'm glad he's doing well. I have bipolar I and my boyfriend has schizophrenia. We both take medication, eat well, have eliminated caffeine, go to therapy and support groups as well as seeing our pshychiatrists regularly. It takes a lot of work to manage a mental illness. Recently, we have both minimized the amount of antipsychotic medication that we are taking and both feel that it has improved our overall health. Antipsychotics help but they have some pretty unpleasant and possibly deadly side effects. I really think it is healthiest to minimize their use. I really hope better antipsychotics with fewer side effects are developed soon.

D
August, 6 2014 at 8:22 am

I wish I could dictate my son's treatment. His life is a mess, and mine is miserable. I try to help in any way I can, hoping he'll experience some kind of epiphany, but I am obviously a wishful thinker. Damned if I do, damned if I don't.
I've known my child since before he was born. I know the real Ben(yes, my son's name is also 'Ben'). He is a wonderful, intelligent, kind-hearted human being who is under constant assault by his own brain. He is valiant in his fight but is often overwhelmed by the noise in his head. Still, he refuses to take the medicine.
If I could force him to take the medicine, I would, and I would not care one hoot what anyone else thought of it.

Julie
August, 6 2014 at 5:47 am

I appreciate your blog. My 20 year old son has schizophrenia and is pretty disabled by his symptoms. He lives with me and I insist he take his meds while he lives here and get him to and from his appt.'s with his therapist and doctors. I often struggle with this subject. Am I too involved? Am I letting him live his life? The meds honestly don't seem to help him much and this is the 10th one he has tried now. I just do my best every day and try to keep him as stable as possible. This is a very hard road and I feel for everyone who has to deal with this.

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