Shifting the Research Lens: Mothers of Adult Children with SMI

Recently, I wrote a book about the challenges and stresses of mothering adult children. I began my research in senior centers in the New York City area and gave members of these centers a short talk about my project. I asked who in the audience was a parent — and I inquired about the parenting problems they encountered when their children were one year old, three years old and 15 years old. The audience laughed and shouted out various issues like teething and sleep (for babies and toddlers) and drugs or problems in school (for adolescents).

I then asked what kinds of problems their 30 or 40-year-old kids faced. The audience became silent. One or two said “depression,” “drug problems” and “unemployment.” I then explained that I was doing a research study that hoped to understand the kinds of problems mothers have experienced with their adult children. At each site, a few women came forward. I arranged a time to interview them privately.

All the women in my study were over 55 years old. I purposely included women who were from all income groups (low-income, middle-class and affluent) and lived in in various parts of the country. I met with each woman two times, conducting in-depth interviews. My focus was on what issues had emerged in their adult child’s life and how these problems had affected them. I quickly realized that these mothers’ experiences and challenges centered around caring for their children who developed serious mental illness (SMI) in adulthood.

Many Mothers Felt Lost and Hopeless

I learned that the women were dealing with more than one problem. For example, Durene, who was 72 years old, told me about her son’s mental health diagnosis 17 years ago. He had gone off to college, but in his second year, he experienced a psychotic episode. Durene had to bring him home from school — and he has been living with her since. She described how life is a strain on a daily basis. He’s “selfish,” she said, and they have fights over keeping the kitchen clean.

On two occasions, her son pulled a knife on her, and she called the police. Her friends advised her to “put him out.” But she told me that she was not going to listen to them. She feared more for her son’s safety. “He will not survive; he will not survive,” she repeated. Durene firmly believed that if she followed her friends’ advice and evicted her son from her home, he would not be able to live on the streets of New York City, homeless.

A main theme that I heard expressed was the women’s sense of shame and self-blame for their adult children’s problems. “I was a working mother.” “My husband was abusive, and they witnessed that.” “I was a single mom.” And this shame may explain why many of them were living in secret, afraid to share even with family the problems they were having in their own homes with their now adult children. They felt alone and increasingly isolated.

Many Felt Unable to Turn Away from Their Role as A Mother

Even though I had not set out to study mothers whose adult children had serious mental illness, to my surprise, nearly all the research subjects’ adult children had problems with serious mental illness and/or substance use disorders. Their children had all returned home because they could no longer work and had no place to live. Each of the women re-opened their homes. A few had sufficient resources to house them in a separate residence. Many had situations like Durene’s, in which they felt their space was being invaded, and they did not know who to turn to for assistance. “If not me, who?” was what I heard from so many about their feelings of responsibility regarding their adult children’s safety.

Another woman I interviewed, Jillian, described that she felt like a mule, attached to a cart, and she couldn’t disconnect. The cart was her daughter’s illness and the need to make sure her child had a place to live and food to eat. Jillian had moved her daughter 21 times in 20 years. As a result of the stress, she hated each time the phone rang, fearing it was the police or the landlord. She developed ulcers and described feeling like she was “bleeding inside.”

Through these interviews, I learned just how much the women’s decision-making was influenced by a deep internalized wish to be “a good mother.” When women were faced with calling the police or evicting their adult children who were putting their lives at risk, so many told me in different words, “That is not what a mother does.” These mothers wanted their adult children to get help — not to go to jail or be homeless. They felt trapped by the lack of available help and by their inability to turn away from their role as a mother, despite their own advanced years.

I Noticed a Difference in Mothers Who Got the Right Support

When I started interviewing moms who had been through the NAMI Family-to-Family Program, I heard much less self-blame. Each of the NAMI mothers described an enormous feeling of relief after attending their first NAMI group; suddenly, they no longer felt alone. Learning about their adult child’s situation as an illness or serious medical condition allowed them to see that they were not necessarily the “cause” of their children’s mental illness and resulting challenges.

The NAMI Family-to-Family program also offered avenues for women to feel empowered to use their energy to help others. Leslie Carpenter, who is now a full-time advocate for people with mental illness, told me, “The whole thing NAMI program really helped me to move from hiding, crying and being angry to speaking out.”

My three-part book delves into the mothers’ stories, hopes for the future and ways to seek support (through NAMI or Al-Anon groups). Thank you to NAMI moms for providing these models of hope.

Judith R. Smith, PhD, LCSW, is a senior clinical social worker, therapist, researcher and professor at Fordham University. A leader in gerontological research focusing on women’s experiences as they age, her new book, “Difficult: Mothering Challenging Adult Children through Conflict and Change” is available on all online bookstores. You can follow her on Facebook and Twitter