Living Alone with Mental Illness: Not for Everyone
Is living independently the right goal for everyone? Whether or not you live with mental illness, I think the answer is: no. For some? Sure. For others? Disaster - or at least not the ultimate goal.
Dangers of Sudden Independence
One year ago my son Ben "graduated" rather suddenly - too suddenly - from his place in a group home with 24-hour supervision to his very own apartment. Within one month, we needed police intervention to remove him from that same apartment, where he had isolated himself in confusion and fear after missing his meds for a couple of days - and most likely cheeking them whenever he wasn't closely watched before that.
Why? Certainly the rug was pulled out from under him way too fast - whoosh! You now are expected to function without structure, community, or purpose. Good luck with that - but also, for Ben (who is a very social person, even with his schizophrenia), he was, well, lonely.
[caption id="attachment_1118" align="alignleft" width="135" caption="Build the Structure Before the Climb"][/caption]
Living alone is not for everyone. It seems to be a very American goal we set almost as a rite of passage for our kids or ourselves- everyone must experience total self-care! - in other cultures, not so much. And certainly, where mental health is concerned, it is not the best universal goal. At least, not for my son; at least, not the way he was thrown into it without the scaffolding to climb to that independence.
Community Matters in Mental Health
While Ben was transitioning to his new apartment last year, I was preparing to present a speech for a program in New Haven, CT, called Fellowship Place. Touring the place, I saw people living with mental illness gathered in the central clubhouse that formed the nucleus of a "campus" of supported apartments. Sure, some lived "alone" as in they had no roommates; however there was always someone right next door, or a short walk
[caption id="attachment_1119" align="alignright" width="170" caption="Fellowship Place "][/caption]
across the driveway to the clubhouse, where you could attend art class, share a meal, help to cook that meal, watch the ball game, take yoga, or just hang out. There were campaign posters on the wall - residents running for positions in the clubhouse organization.
Whether you wanted to help run the meetings, have a say, or simply find people to smoke your cigarette with, it was right there: community.
We all have different needs for it. On the scale of "I" (for introvert) to "E" (for extrovert), I am way over on the E side, while one of my brothers is a clear I. He happily lived alone, until he fell in love with his wife. Me? I loved living alone for about a year, then hated it - and moved into a house with roommates. I craved the company, and the challenges, that community brings.
But for my son? No matter how much he thought he'd love it, living alone made him miserable. He felt isolated, unloved, unguided, and uninspired. He spent hours hanging out at a diner on the days he wasn't at work - because he craved purpose and company. And, before long, he relapsed.
As I said, not for everyone.
I recently re-met the director of Fellowship Place, when I interviewed her for a NAMI-CT video. She told me that while many residents there have their own kitchens, and can easily cook for themselves, very few do. They much prefer to walk to the clubhouse and share a meal. They may as well use the stoves for storage, they are that clean.
I get it. Ben would have loved to have a place to go, to share a meal - that's what human beings tend to want to do, most of the time, mental illness or not. Yes, he is a member of an ICCD clubhouse, a bus ride away - but getting there sometimes required more motivation than he could muster that day. He needed more. We must support programs that allow for the value of community - for, without it, who are we?
Sharing with others: Recovery with Community
There is a Jewish prayer that says, For what we are, we are by sharing. As as we share, we move toward light. Yes. Schizophrenia stole that sharing from my son, as he got sucked into an inner world that made it such an effort to share; Recovery in community is bringing him back.
Ben is doing so much better now, because he matters to others. Not just his family, either - he has friends, employers, fellow employees, and more. Getting to this place began with having chores to complete in his group home - making a difference to others - and gradually moving ahead from them.
Community matters- in the right amount, for each individual. Let's never forget that.
Kaye, R. (2012, September 22). Living Alone with Mental Illness: Not for Everyone, HealthyPlace. Retrieved on 2020, November 30 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2012/09/living-alone-with-mental-illness-not-for-everyone
Author: Randye Kaye
My son's doctor is pushing him to eventually get his own place by himself.He doesn't feel comfortable with the idea.He lives with my husband and me, works partime and has chores around the house.We enjoy his company as he enjoys ours.We have a big family and we all love close to each other.My son can walk to work and visits family members when he gets lonely.He is also in the process of studying for a test he'll be taking towards his degree in college. He doesn't need or want to live alone and I can tell that the idea of living alone makes him feel very anxious.I don't like the doctor putting pressure on him to do something he feels so uncomfortable with!
Hi, I was searching for a solution for my sick brother independently living and saw your article. I live in Iran and we couldn't find any support groups for those who have mental illness, and my parents are old, so I am searching for a way for my brother to live without need of my parents. He's about 40 and doesn't leave home much and just has my mom to talk to which sometimes he get stress and talk a lot and my mother lost all her energy and focus. Do you know any way which we can do?
Thank you, Bahar
hi Shell -
to my knowledge this is not a medicare issue. I certainly understand the frustration you and your family feel, having gone through it myself. have you contacted your local NAMI chapter? or state? they can help steer you in the right direction. in my book I talk about having to "make my son homeless" to get him placed somewhere, and the group home was a great step for us all, but it isn't easy. books like "Defying Mental Illness" give practical advice, and there are some excellent articles on healthyplace.com, but each state has its own system.
hang in there. I know it is so tough.
I may be in the wrong place to ask this question. My son who is 31 has been newly dx with schizoid affective disorder, i have known for a long time that something more was wrong. I did not know that there were places for people like my son to live. He is with me right now but my husband has about had it...i know my son can not live on his own. I have been ill and not able to work,otherwise i would just have him with me. Does anyone know if medicare will pay for a home. If i am the wrong place please point me in the right direction. Thank you
You talk mainly about people with schizophrenia. People with other mental illnesses also find living alone daunting. There are complicated situations too, like mine: I have been married 27 years and raised 3 kids the last of whom is about to turn 18. I don't literally live alone; I live in the same house I've lived in for 11 years with my husband. My kids occasionally return home for visits or breaks from school and my youngest is living here. However, I feel utterly alone and isolated. Many days I do not leave the house. My husband works long hours, my son is in school (I hardly see him when he's home either!). I have no structure in my life anymore; everything used to revolve around my kids, and being a parent was my identity. It helped me manage my bipolar too. My isolation, loneliness and grief about my children growing up and leaving all contributed to the recurrence of my illness. Even if I were well, it would be difficult to rebuild a structured, connected life by myself starting from zero (no friends, no close family) -- with a mental illness it's nearly impossible. I would love to live in a supported community like your son's -- even though many would envy me my house in the suburbs with my loving husband. I hide in my house all day, only "talk" with someone on the Internet, have started self-injuring again....and I'm just at a loss as to how to rearrange my life so as to counter my illness' effects of isolating me and escalating when no one is there to care. A psychiatrist, therapist, case manager -- all are not enough without some kind of structure and regular social interaction. I don't know what the answer is, but I know there are many, many people like me and your son. Thanks.
Hi Kathy -
Thank you so much for sharing your story here. Having gone through the empty-nest identity change myself, I can't even begin to imagine what it must be like when you are also living with bipolar disorder, and so many of the things that "neuro-typicals" turn to may seem impossible to access.
I write about schizophrenia more than the mood disorders because that's what we live with here in this family, with my son's diagnosis. However, I've met so many wonderful people who live with bipolar, and some of them find community in the NAMI Peer-to-Peer programs, even participating in "In our own voice". Our "Breaking Bipolar" blog also has some great tips. I think you are right - if you can find community beyond those who are "Case managers", it may be really helpful.
Hang in there - I don't want to give you platitudes, but when things get tough here I often find help in taking even one small step toward tomorrow. You have so much courage and smarts - that is clear in this letter.
Your blog is a terrific reminder for those of us involved with the mental health field. I am president of the board of Fellowship Place and we are all grateful for your inclusion about us in your article. i hope Ben is doing better. All of us who attended your talk last year appreciate what you bring to the discussion of issues for our loved ones.
Best, Ron Netter
Thanks, Ron! Yes, Ben is doing better right now, as he continues to pay rent but chooses to visit his family more often than not. For now, we have provided our own transition, until he finds an apartment with more opportunity for community and gradual steps. What do people do who have no family to be their back-up, and no access to wonderful programs like Fellowship Place?
Thanks for such a terrific example of what works!