Mental Illness and the Whole Family: Not Just Parents

June 14, 2011 Randye Kaye

So far all my posts here have been from the parental point of view. As you may know, I am the mother of a wonderful kid, now 29, who was unlucky enough to develop paranoid schizophrenia in his mid-teens (diagnosed at last by age 20). My book Ben Behind His Voices, is told mostly the parental perspective - though writings from Ben himself as well as from his sister, Ali, round out the story as best we can.

The title of this blog, however, is Mental Illness in the Family - and so I don't want to leave out the experiences of siblings, spouses, and children. This post is about - and for - you.

I have taught NAMI's Family-to-Family course over a dozen times, as both teacher and trainer (guiding others to becomes teachers in Connecticut), and each time I am reminded that my experience as parent shares much with the other "relative groups" - but not all.

[caption id="attachment_79" align="alignleft" width="150" caption="NAMI Family-to-Family Training Class"]NAMI Family-to-Family Training Class[/caption]

Most of the participants in my classes have been parents - I'd say at least 80% - but when we get to the class where we get specific about the family experience, I'm always painfully reminded that there are special challenges, and specific pain, in each of the groups.

We all share many feelings when mental illness hits our family: shock, confusion, loss, guilt, anger, sadness, helplessness, grief and finally a measure of acceptance and advocacy. But, as a parent, I know that I have at least some "right" to tell my child what he can do. There's a degree of authority built into our relationship, which comes with the immense responsibility of being a parent. Ideally, that authority diminishes as children break away and become responsible for their own lives; where there is a mental illness, however, that process is slowed down at best. At some point, the question becomes: what will happen when we are no longer here? I chose P.L.A.N., by the way, to spare Ali from being Ben's financial decision-maker at that time.

For spouses, however, the grief may have an added dimension: This was supposed to be my life partner, not a child - how can I tell him or her what to do? I don't want to parent my spouse. I want my partner back. Finances, the relationship balance, child-rearing - all come apart at the seams.

For siblings, there are issues of loss of a peer as well. I know that my daughter, Ben's sister, went through a huge period of adjustment when her big brother seemed lost to her forever. Finally, thankfully, he came back to us - but now is more like a little brother to her. She has advanced past him in her life, and that shift included a lot of grief. They are very close, and clearly love each other, but that loss is a part of our family. Siblings experience loss of attention, survivor guilt, worry that they will eventually become caregiver to their sibling, and more. There's also the social stigma if your "oddball" sibling does something to attract stigma - and the fear that the illness will happen to you too.

Children raised by parents with a mental illness are robbed of the parent they "should" have had. I'm reading Memory Palace right now, and there arempbookcover-198x300 numerous other memoirs that tell the story from the child's perspective: Four Rooms Upstairs, The Glass Castle, Swallow the Ocean. Some of the feelings: fear, social stigma, constant absence of the parent, having to grow up too fast and become caretaker.

Yes, it's true: mental illness happens to the whole family. I am a parent, and can only speak with certainly from my experience, and try to speak for my daughter about the sibling experience. But know that this blog is for you, too, children and spouses, and always feel free to comment from your perspective. We share more of the emotional responses than not - but it isn't, obviously, exactly the same for any of us. The more we understand each other, the more we can help each other.

APA Reference
Kaye, R. (2011, June 14). Mental Illness and the Whole Family: Not Just Parents, HealthyPlace. Retrieved on 2024, July 19 from

Author: Randye Kaye

Judy Lynch
August, 5 2011 at 4:20 am

Thank you for all you do, the education and validation of all the feelings a family of a mentally ill child deals with! Many times we feel so isolated and in reality there are many families dealing with similar situations. The parents, siblings and extended familiy ( grandparents, cousins, aunts, uncles and neighbors) are all affected by the change in relationships caused by this disease. My oldest son is a paranoid schizophrenic and the road has been difficult for myself and the entire familiy..... but I can't even imagine the suffering that my son has endured. We all need to continue pursuing support and care for these individuals. Thank you again for bringing awareness to the forefront!

In reply to by Anonymous (not verified)

Randye Kaye
August, 5 2011 at 7:10 am

Hi Judy - thanks for your comment. It means so much to know that my words are of some help, somewhere. My goal is to create that awareness, as you say, and to reinforce respect, understanding, and positive actions to help those diagnosed with a mental illness (like your son, and mine) and their families. Hope you'll keep reading!

Nina Mensing
June, 14 2011 at 11:18 am

So true. My book 'A Manic Marriage', available on covers my relationship and marriage with my husband who suffers from bipolar 1 mood disorder, and all the family relationships surrounding us. The family are often the forgotten sufferers in the scenario.

Randye Kaye
June, 14 2011 at 8:17 am

Wow, Michele - thank you for writing about this, and especially for sharing how this post affected you. Awareness is a change all by itself, and sometimes it brings other change in its wake. My best to you and your whole family, and thanks again for commenting so honestly.

June, 14 2011 at 8:02 am

I have a mental illness, bipolar and anxiety disorder. My son also has a mental illness but that's besides the point. I never really think about how my husband must feel. I once told him that we have a parent/child relationship, him being the parent and me being the child. I never really think about how hard it must be on him, to watch me like this, to have to do everything around the house, the worry, to have to do all the shopping because I'm pretty much confined to my house. Now that I think about it I love him even more for sticking by me, not everyone would.

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