MIND GAMES
Caring for the mentally ill has its own set of rules
BY:JANET ASCHKENASY
As a yoga instructor, I find mantras very helpful. And as the adult daughter of a schizophrenic, I have begun working with the following statement of faith: “You are doing great, you are doing great…”
This affirmation wasn’t for my mom or students, but for me. Its slow, steady repetition worked wonders as I walked over to my first meeting of a Daughters and Sons support group held by the New York City-Metro branch of the National Alliance on Mental Illness (NAMI), where I was about to dredge up deep and dark emotions dealing with supervising a parent who could never supervise me.
The problem is much more common than most realize. Nearly one in every four households—about 22.9 million nationally—is now involved in caregiving, usually for a family member or loved one. And mental illness is the number-one reason adults under 50 years of age are in need of a caregiver’s assistance.
In addition to the most frequently reported unmet needs of all caregivers—finding time for oneself, managing emotional and physical stress, and balancing work and family responsibilities—certain problems speak uniquely to children of the mentally ill. We may build up incredible anger toward parents who were unable to care for us properly as children. There’s also the deep shame such resentment kindles within us as adults who dearly love our parents but suffer the nagging fear that the illness that’s disrupted our parents’ lives could one day sabotage us as well. Few of us can truthfully say we don’t identify with our parents on a deep level—particularly where illness is concerned.
Before I attended my first Daughters and Sons meeting, I was interviewed by group facilitator Stasia Pasela. Talking to Pasela—who also is the daughter of a mentally ill parent—felt like talking to a mind reader. For several months after Mom’s live-in caregiver abruptly departed, my mother lived on her own with the aid of a companion, a geriatric care manager and my own supervision. Mom does well, but tends to be awfully needy. I told Pasela that I wanted to enjoy my mom, but that her constant demands were getting in the way.
“Do only one thing a day for your mom,” she recommended when I mentioned the blizzard of phone messages I regularly receive. She had heard of a useful meditation that perhaps would help me. “Picture a river of love flowing from God’s heart to your heart and the heart of the person you wish to forgive,” she suggested. Had I said I was angry with Mom for her sickness and wanting more than anything to cultivate a spirit of forgiveness? I didn’t have to.
Sharing with others who are in the same boat goes a long way. We learn we aren’t alone—and that the professionals don’t have all the answers. We are the ones who live these experiences day in and day out. “Until recently, few mental-health professionals or advocates were aware of the unique issues faced by the daughters and sons of people with psychiatric disabilities,” observes Maggie Jarry, a co-founder of NAMI New York City-Metro’s Daughters and Sons support group. In her younger years, she says, “I lacked a framework to help me understand the concerns and preoccupations that are typical of daughters and sons of people with psychiatric disabilities.”
Later, in the 1990s, she came upon the book When Madness Comes Home by Victoria Secunda. Upon reading it, she first discovered a list of common experiences of adult children of the mentally ill. “As I sat at home and read the list,” says Jarry, “I cried. I realized that fearing having children, having difficulty forming romantic relationships and struggling with forming a sense of self were very common among people like me. What a relief that was!”
It was a watershed moment for her. “I now know that daughters and sons of people with psychiatric disabilities routinely experience feelings of isolation, have difficulty forming intimate relationships, fear inheriting a parent’s illness, can be confused about identity, are wont to be perfectionist and often grieve as they grow older over never having had a childhood. I began to think,” Jarry continues, “about eventually building a national movement to share information with others. My hope has been that such a movement could happen through NAMI.”
And though years of dealing with a parents’ mental illness often lead us to be creative, emotionally expressive and tolerant of others, it can sometimes kindle impatience in the kindest of caregivers. At a NAMI Family to Family workshop in New York, participants learn that people with mental illness experience fear and confusion and all the other things that everybody else feels. “It’s important to have empathy for their feelings,” explains Patti Sacher, a local volunteer teaching the 12-week program twice a year, “and not try to argue them out of their delusions.”
My NAMI experience has helped me set limits with my mom and focus more easily on the other parts of my life with less guilt. As Sacher observes: “Sometimes you have to say, ‘This conversation is not good for you or good for me. I love you. Goodbye.’” Caring for myself more consciously, with the aid of tools from NAMI, has helped me develop compassion for my mom, too. Like they say, you have to put the oxygen mask on yourself first.
The Family to Family curriculum also teaches you to identify the feelings behind the behavior. One must understand that “it must be really scary to think that people are after you rather than trying to argue them out of it,” says Sacher. Her advice reminds me not to bristle at Mom’s unique brand of behavior because she really can’t help it. I finally get it that Mom is doing the very best she can.