Or, When It’s Good To Break The Rules.
“In other cultures, children live with their parents into adulthood. I don’t understand this push to get them out of the house. Families should be together.”
This is what Catherine said only months after her son, Philip, had died. He had been diagnosed with a serious mental illness. He had gone off his medication, became psychotic, and had lain on a railroad track.
I can still feel the pain in her voice as my sister and I sat in the darkening room listening to her story, surrounded by pictures of him that had been on display since his funeral.
His father and others who didn’t fully understand his illness had, against her wishes, encouraged Philip to move away from her and live in a group house. They said he needed to become more independent. Catherine knew Philip wasn’t capable of many things, including living on his own. From his first break, Catherine had been Philip’s primary advocate and caregiver, made every medical decision, health insurance arrangement, and compiled mental notes about his changing behaviors for his doctors. While living with her, Philip was capable of few things but she encouraged him to attend therapies and workshops that seemed helpful for him and had him on a schedule of things to do each day. That, she felt, was important to his healing. She even adopted two kittens to keep him company during the day when she had to be away for work. But she had little support in caring for him.
At the time of Philip’s death, his housemates were away for the holidays, he wasn’t being monitored and he was very, very ill.
I think about Catherine often. She is a kind and giving person who did everything she could for her son. But she was often doing it alone, and now grieves alone. I think about Catherine when I read or hear about a parent who struggles alone, without support or understanding from a spouse or other family members. Because people living with mental illness do much better when they are well supported by loved ones. The single parents we interviewed told us they had to find ways to cope, and they are exhausted. Often their new partners (who are not the biological parents of their children) have trouble understanding what to do when a person is in a mental health crisis and that scene can get ugly. Parents who are supported by their spouse expressed that they couldn’t fathom how a single parent could care for a child with a mental illness without the other parent stepping in. Because a crisis is unpredictable, all-encompassing and sometimes downright frightening.
Support doesn’t come just from immediate family. It’s a community at large that can make a difference for a person who lives with mental illness. This is why the movement lead by BringChange2Mind and other groups to talk about mental illness is so important.
In her article, Beyond the Brain from last summer’s The Wilson Quarterly, (http://www.wilsonquarterly.com/article.cfm?aid=2196#.UOR7b8OB6j0) Tanya Marie Luhrmann argues that strong community can be the difference between functioning and not for a person living with mental illness. Given that higher stress can trigger mental illness for individuals who have a proclivity for it, she cites research on immigrants and suggests a correlation between weak community for the new arrivals and higher rates of schizophrenia. Luhrmann makes a good case for the efficacy of treatment when family and a tight-knit community surround an ill person.
What Luhrmann talks about regarding community and family and advocating for a loved one with mental illness is what we learned from the parents we interviewed. Successful outcomes seemed more likely for those who were supported by advocates who are supported also. There are times a family must send a loved one away to a qualified treatment facility—for addictions or other mental health issues—but here too, the best facilities create an atmosphere of belonging and inclusion in some manner. It should make sense to anyone that the healing needed by a person in crisis can more likely begin by being embraced rather than rejected into the margins.
Catherine’s dismay that Western society boots a young adult out the door was justified. In her gut she knew her son needed his loved ones—his mother, sometimes his sibling and their circle of friends— around him because he was very ill. Dan and Rebecca also knew their adult daughter needed to lounge around their house for the year after she was released from hospital treatment for depression. Sometimes, for the love of family, one has to break society’s rules. Or make the rules bend toward compassion.
*Blogger’s note: After publishing this post, we heard from one of our contributors who clarified that it is not always in the best interest of the family for a mentally ill person to live at home. When a person with mental illness is unstable or has erratic behaviors, it creates a chaotic and unproductive environment for the family where often the parents devote all their energy to the ill person and neglect other familial relationships. Depending on the phase of recovery, a person with mental illness may do best within a structured treatment facility or a group residence.
Our intended message for this post was that our parent/ contributors have found it is best to make decisions regarding living arrangements and treatments that are in the best interest of the ill person, not what society dictates is the way adults should live. The well-being of loved ones is critical as these individuals are usually the best support a mentally ill person has in his corner.
Thank you to our reader for prompting a clarification. We always welcome comments.
Perhaps you’ve noticed the PSAs produced by Bring Change 2 Mind, the mental health advocacy organization founded by Glenn Close and her sister Jesse. The organization’s mission is about reducing the stigma around mental illness. The ads feature people in pairs. In one ad, each pairing wears plain white t-shirts with one’s mental illness diagnosis, “schizophrenia,” for example, printed plainly across their front while their partner’s label may say, “sister,” or “wife,” or “mother.” These many white-shirted pairings move through a crowded train station, the obvious message being that there are many among us who live with mental illness and they and their loved ones wish to break the mental illness stigma and spread the word that there is hope. Another interpretation might be that there are many among us who live with mental illness who need support of another.
There’s more to Glenn Close’s partnership with her sister for mental health advocacy than her celebrity. It’s that in order to have hope with mental illness, there really must be a partnership of some kind, whether it’s a sibling, spouse, or in many cases, a parent. A mentally ill person’s chances for recovery significantly improve when they have support. A person in a mental health crisis is often incapable of the self-awareness that he is unwell and only a trusted partner can convince an often unreasonable individual into treatment. And even that can be dicey.
A mother of a son who lives with a serious, persistent mental illness once said she thought the reason there wasn’t more advocacy around mental illness, more marches and money raising for research, was because the parents and family members are too exhausted and can never plan anything too far in advance. You just never know what’s going to happen from one day to the next. Another mother we interviewed admitted, “You never know when the other shoe is going to drop.”
The truth is, a mental illness significantly impacts the loved ones of the diagnosed. Of course, most serious illnesses impact loved ones. But particularly in the early stages, brain disorders are wildly unpredictable. The illness can change day-by-day, hour-by-hour. Symptoms of one’s mental illness are frequently identified after a series of harrowing events, self-harm and frightening behavior. The brain is both delicate and powerful. Dan, whose daughter, Stella, was later diagnosed with schizophrenia, was engaged in intelligent conversation when she began talking about a chip in her head, seemingly out of nowhere.
I once overheard an acquaintance complain that she was tired of her friend cancelling plans on her all the time. “She’s so selfish,” She said. My jaw dropped. Because the “friend” she was complaining about is the parent of a son who lives with a serious brain disorder. Parents of adult children with mental illness often say things like, “Today we are great. If you’d have asked me two months ago…”
And that’s the rub. The parent of a mentally ill child makes for a lousy friend. Yet who needs support more than a person who is constantly on guard, monitoring another’s needs? When a crisis can, and often is, a life or death drama? They are preoccupied. They cancel, don’t return calls, and their everyday concerns are about who will care for and what will happen to their child tomorrow, next year, and after they are gone. When the abnormal amount of time passes without hearing from my friend, the mother of a bipolar son, I don’t take it personally. I worry.
As a result, it is common for the parents of adult children with brain disorders to lead rather isolated lives. It’s difficult for those who don’t live with a mentally ill person to understand the daily challenges. And again, it’s difficult to make plans.
Parents frequently tell us about the physical, mental and emotional exhaustion from expending the energy required to stay on top of things—whether it’s keeping their child on their medication or simply the constant monitoring of moods. Not to mention the stressful decision-making required during hospitalizations, or for addressing treatment choices, or even worse… the insurance.
A single mother of a son diagnosed with schizophrenia told us that while she is often exhausted beyond belief, she does have the support of a male friend who visits her son when he is hospitalized and while she is working. Her son’s friends, a very special group of young men who remain loyal, make sure to spend more time with him when she needs to be out of town.
Our social protocols don’t outline what to do when a friend’s loved one is diagnosed with mental illness only because society seems to see “mental illness” as something different than other serious illnesses. There aren’t flowers, cards, and casseroles. But perhaps there should be. And as with other illnesses, after the initial shock of the diagnosis, there could be follow-up calls, and the simple gesture of listening.
Let’s join Glenn Close and her sister Jesse in spreading the word about breaking the stigma of mental illness. Go one step further and help others understand what mental illness really means to the diagnosed and their loved ones. Some day, it won’t be uncommon for the families of a person diagnosed with serious mental illness to hear, “What do you really need?”