(2-25-22) Leslie Carpenter, a well-known Iowa advocate and reader of this blog, sent me an email about a new book entitled: DIFFICULT: Mothering Challenging Adult Children Through Conflict And Change by Judith R. Smith.
“It is unlike any other book I have read so far,” Leslie wrote, “as it exposes the unreasonable burdens placed on family members…”
During my travels, I’ve seen how mothers often take on tremendous guilt when a child develops symptoms of a serious mental illness. Often times, it is mothers who assume the role of caregiver, especially if their ill child is a daughter. I contacted the author.
“My book is based on a three-year research project,” Judith Smith writes. “The book brings to life the stories of thirty-five women, each over sixty years old, whose lives were drastically altered by becoming the default safety net for their adult “kids.” … I discovered that mothers perceived their adult children’s behavior as “difficult” when they found themselves, once again, prioritizing their children’s needs over their own and saw no “exit” for themselves or their adult children from their problems.”
She agreed to let me post several paragraphs and a book excerpt.
From DIFFICULT: Mothering Challenging Adult Children Through Conflict And Change By Judith R. Smith, Phd, LCSW. Published by Rowman & Littlefield Publishers. Used with author’s permission.
Four key quotes about mothers:
“In all cultures, mothers are expected to be altruistic and, when necessary, give up their own needs in order to feed and clothe their children. In the 21st century world of parenting, a mother’s altruism is supposed to extend to her providing deep, exclusive, and full attention to her children. The assumption is that children need an adult who will be at their disposal to listen, hear, and play. Mothers who are not “one with their children” or have conflicts about being a mother, even momentarily, can be made to feel as if they are failures. They label their behavior as “appalling” if they feel angry at their children. They believe that “good mothers” don’t have any negative feelings about their children.”
2. “A mother’s self-blame and her internal mandate to protect her children do not dissipate as her children age. Many studies have documented how mothers negatively react to problems in their adult children’s lives. They experience distress and feelings of failure that can undermine their maternal identity.”
3. “A mother’s self-blame and her internal mandate to protect her children do not disappear as her children age. The women I interviewed all accused themselves of having done things that could explain their grown children’s current problems.
“I spoiled him.”
“Their father was not around when they were older.”
“She followed in my footsteps and married the wrong person.”
Many wondered if they had “been stronger” or “paid more attention” or “been around more and not at work” if the outcome would have been different. Perhaps their child would have been more self-sufficient, less prone to anger or substance abuse issues. Perhaps and if are the words women use to wound themselves.”
4. “Mother blaming” has been defined as holding mothers “responsible for the actions, behavior, health, and well-being of their (even adult) children,” writes nurse researchers Jackson and Mannix, who interviewed mothers who had sought help when their teenagers were in trouble and starting to abuse drugs. The mothers reported that rather than having their child’s situation addressed with helpful resources, the women felt blamed. This assumption—that mothers play the lion’s share in determining the person their child becomes—was most dangerously promoted by in the 1950’s by psychiatrists who stated that autism was caused by “refrigerator mothers.” Of course we know now that autism is a genetic and neurological deficit, but consider that seventy years ago many people thought that autism was the result of a cold, distant, and rejecting mother who did not awaken the child’s emotional capacities. It led to the simplistic and harmful misconception that autism is caused by inadequate parenting, which in turn resulted in many parents blaming themselves for their child’s difficulties.
Although later research documented the inaccuracy of this, the theory that mothers are the explanation for their children’s problems continues today.”
Book Excerpt: From Bewilderment to Acceptance: Adapting to an Adult Child’s Mental Illness
Many are familiar with Dr. Elizabeth Kubler-Ross’ five-stage model of the ways in which people with a terminal illness process their feelings. People move, she said, from denial, to anger, to bargaining for more time, to depression and then acceptance. These stages aren’t linear or fixed, nevertheless they have helped a great many people (and their caregivers) navigate the complex terrain of grief. Similarly, Dr. David Karp, a professor of sociology at Boston College, created a model to describe the stages that family members experience when a family member has a Serious Mental Illness. These include:
- Bewilderment and Confusion
- Getting a Diagnosis
- Cycles of Stability and Instability
- Acceptance of Permanence of the Disease
Stage One: Bewilderment and Confusion:
In the first phase, parents try to make sense of witnessing the uncharacteristic and bizarre behavior in their adult child. Wendy and her husband, Ralph, were confused about their daughter Mindy’s behavior. She was acting differently than she ever had. She started to make changes in her life that were surprising, including getting a divorce and leaving her high-paying prestigious job to become a yoga teacher.
But Wendy and Ralph told themselves that they had always trusted Mindy and her judgment had always been sound, so beyond asking many questions about the new choices, they chose to live with their confusion. But this all changed on one visit when Wendy had a “light bulb moment” which confirmed for her that their daughter was in trouble.
“We got in the car, and I rode in the front seat with her. She took a right turn out of the driveway. I just casually said, ‘Oh we usually go the other way.’ My saying that caused her to go into an ‘episode,’ only I didn’t know at the time that it was ‘an episode.’ But there was this frozen look on her face. I tried to keep her calm by saying each wrong turn she took, was still ‘ok.’
After many wrong turns, Mindy stopped the car, took a breath, and looked at me and said, ‘Wow, that wasn’t real back there! Sometimes it’s hard for me to tell real from unreal.’” Wendy and Robert then knew for sure that their suspicions were correct. Something was amiss with their daughter’s mental health.
Stage Two Getting a Diagnosis:
Most families learn that their son or daughter has schizophrenia or bipolar disease when their behavior necessitates them having to be hospitalized.
Stage Three: Cycles of Stability and Instability:
Living with a family member with SMI is cyclical. The person can recover after a course of medication within the hospital, have a period of stability, until a stressful event again triggers the illness, and the person becomes actively psychotic again. For many, there is a brief hospitalization and the use of anti-psychotic medications. The patient is discharged after a few days with a plan to continue the medications and seek talk therapy. Unfortunately, most patients with Serious Mental Illness do not continue taking their medication upon discharge.
Most people with SMI struggle with the illness throughout their lifetime—as do their families. At age seventy-five, Jillian has seen her daughter through almost fifty years of stability and instability. When she spoke with me, Jillian couldn’t remember all the details of when, and if, Celia had seen which therapist, or what diagnosis her doctors had given or when. What she did tell me about was the objective ways she had to be involved to keep Celia safe. She had moved her daughter in and out of twenty-one different apartments over a twenty-year period.
Jade at eighty-two was tired and worn out. She, too, had only vague memories of the course of her daughter’s illness. What she spoke most clearly about was an incident a few years ago when her daughter attacked her. That’s when, with the help of the police and social worker, Jade obtained an order of protection forbidding her daughter from moving back in.
Stage Four Acceptance:
When patients and their families get a diagnosis of SMI, they are, in effect, being told what they already know—something is wrong. Learning the name for that something can be met with a mixture of relief, fear, and despair. Ultimately, this can lead to acceptance.
The last stage in a family’s adaptation to their loved one’s illness, acceptance recognizes that parents cannot control their family member’s mental illness. The 4’C’s mantra of Al-Anon “I did not cause it; I cannot control it; I cannot cure it; all I can do is cope with it” applies not only to a loved with a substance abuse problem, but also to living with a grown child with mental illness.
To be able to accept that you cannot control your adult child’s illness is to radically change the parent/child relationship from one of moral obligation to care for a dependent, to one of separateness and respect for the other’s control of their destiny. A mother’s acceptance of her lack of power and ultimate inability to manage is not easy. Women grow up believing that as mothers we have an enormous opportunity and responsibility to shape the next generation. Each person who comes to the acceptance stage, does so at her or his own time and to a different degree.
Most of the mothers whose stories are shared here had at least an intellectual understanding that their efforts to control their child’s illnesses were fruitless. Yet the heart does not always agree with the head. This realization did not end their felt connection. As Faith told me, “Am I just supposed to throw my daughter and grandson away?” Even Iris, who moved rather than witness her daughter’s “destructive”’ behaviors, found a way to check in on her daughter. She used Facebook to see if her daughter was posting. If several days went by without a post from Fern, Iris would call the local shelter and food pantry to see if the workers there had seen Fern? The staff were glad to help. Knowing that others had put eyes on Fern, that she was okay, helped Iris manage being at a distance.
Wendy
Wendy’s daughter did not fit the typical age of first onset of SMI, which is late teens or early twenties. Mindy, forty-five, was happily married and had a successful career as an executive-level scientific researcher. At sixty-five, Wendy was glad of her empty nest, which meant that she could travel and enjoy time alone with her husband. She had always assumed that once she had raised her children through their teens, they would go off and live their own lives. Family vacations and weekly phone calls were how they would stay in touch.
This all changed when Mindy told her parents that she was planning on selling her apartment, buying a camper, driving towards the North Pole and that when she ran out of food, she would starve to death. This came months after she had announced that she was divorcing her husband and quitting her job. While Wendy and her husband had been dismayed by the divorce and job change, they had confidence in their daughter to make her own decisions.
It was when she started talking about suicidal plans that their bewilderment changed to alarm. Wendy and her husband, Ralph, who had never had any knowledge about mental illness, realized that they better get educated very quickly. After googling “mental illness,” they met with doctors in their community, spoke to lawyers and started checking in on and visiting Mindy much more often.
Now more informed about mental illness and different routes to getting their daughter treatment, Mindy’s parents were prepared when she told them she was thinking of shooting people from her rooftop. Putting their already researched plans into action, Ralph flew from Boise to Pittsburgh, where Mindy lived. In the cab from the airport, he prayed that she would let him into the building. She did … and she showed him the gun.
Ralph knew that she could hurt other people, maybe even him. He got her to put the gun down and hand it to him. They went inside and had a cup of tea. He told her he needed to take care of some things and would be back soon. With the help of Mindy’s friends, who lived nearby, Ralph took the gun to the police station, where it would be used, along with the suicide note that she had emailed to her brother, as evidence in the involuntary commitment process,. The police returned with Ralph to Mindy’s apartment, and she was taken (against her will) for emergency psychiatric care.
Because of the extensive insurance Mindy still had from her job, she was able to afford an excellent and long-term stay in the hospital. Wendy and Ralph were back and forth to the hospital over the entire year that she was hospitalized. While Wendy originally kept Mindy’s situation private, with time she decided to go public and tell her brothers and sisters. Rather than being judgmental, they provided information, resources and created a prayer team. Every day at 3 pm, they each would join Wendy in prayer.
Upon discharge, Mindy’s doctors believed that based on their current hypothesis about her illness, she had experienced a single episode of psychosis and would most likely not have a recurrence, along with depression. Mindy emerged emotionally strong enough to return to her demanding job. She was fortunate that her employer took her back, yet she also lives with the fear that her illness might recur.
She made up a list of behaviors that might indicate that her disease was resurfacing and asked her parents and siblings to remain alert.
These included: Am I acting as if the world revolves around me? Am I seeing things or hearing things that are not there? Do I notice random words and make meaning of them? Wendy told her and me that this list would not be sufficient. What would matter was that they all stayed in touch and talked openly if they became worried…
Wendy said her life will never be the same. While she remembers believing when her kids were little that mothering would end when they left the house, she now knows that watching out for Mindy’s possible relapse will be with her forever. This realization, however difficult, has helped Wendy. She no longer harbors false hopes and does what she can to help her daughter to live the best life possible.
Coping with Negative Emotions
A number of the mothers I spoke with acknowledged having powerful negative feelings about their son or daughter—including hate.
Sharon, who feared foreclosing on her house because of having to support her daughter, shared that she almost wished she had never had a second child. Wendy had a hard time facing her anger toward Mindy for having become ill and requiring so much assistance from her parents. When talking about her son, Eric, during his drugging days, Brenda said she had wished that he had been someone else’s child – not hers. Revealing these taboo emotions were usually offered with a disclaimer—that what disturbed them was not the person, but the person’s behavior or illness.
Tracy had reframed Jeannie’s physical attacks on her. She told herself that it was the mental illness, not her daughter, who was hitting her in an angry rage. Tracy’s attempt to see her daughter as someone who has a mental illness, but is not defined by it, allowed her to hold on to the positive parts of their relationship. She knows that when Jeannie is between episodes, she can feel close to her. Jeannie will call, they will go for walks together, or they will share a meal.
Not all mothers are able to separate the person from the illness, particularly when they are attacked or told by their own child, “I hate you.”
Iris invited her daughter back into her home after she became very ill and could no longer live on her own. “I wanted to be there for her because she was my daughter and if she’s sick, she needs help. You know, that’s what you do or at least that’s what I actually did.” But after a year, when Fern screamed at Iris and said that she was a terrible mother and that she hated her, Iris’ emotions took over. She became enraged and grabbed her daughter and slapped her. Fern, who was stronger than her mother, held onto her mother’s wrists and looked her straight in the eye. “I could kill you,” she said. In telling me about this episode, Iris wanted me to know that Fern had said “I could kill you,” rather than ‘I will kill you.’ That Fern had been restrained in her choice of words was important to Iris. This was her way of protecting her tie to her daughter.
Family Interventions
Although not geared to the needs of parents, per se, family psycho-educational groups are effective in helping family members manage their adult child’s illness. The groups are led by mental health professionals and include content about the specific mental illness, medication, treatment management; assistance in improving family communication and ways to engage in structured problem solving and crisis management. For the intervention to be most effective, a family should begin the group soon after the patient’s initial discharge from the hospital. Despite research that has shown the positive value of these groups for the patients and the family, there has not been sufficient government funding to make this treatment accessible in most communities.
Peer Support Groups
Peer-led groups provide parents of adult children with SMI with information about their adult children’s illness, as well as much-needed support. National Alliance of Mental Illness (NAMI) offers support groups in most cities. The organization was started by mothers in the 1960’s including Joyce Burland, a mother who felt dismissed by her son’s psychiatric treatment team. She realized that families had an unmet need to be educated and informed about mental illness. As most people with SMI live with or are supported by their families, “Family to Family” a nine-session group learning experience provides a forum for parents to both be supported by others in a similar situation and learn about resources and strategies for communication with an adult child with SMI.
When Leslie’s son was first diagnosed, she and her husband wanted to understand his condition. They looked for and devoured as many books on the subject of mental illness that they could find. Although they had heard of the peer-led organization, NAMI, they did not get involved for more than seven years after Leon’s first hospitalization.
“We waited too long. But getting there was transformative. We had resisted it, because we were both working full time jobs, and we were trying to keep our daughter’s life normal. We didn’t want to give up more time out of the house. And we thought this was all about his illness and how broken the system was, we didn’t really recognize that we needed something…But getting involved with NAMI for me was huge. It helped me process my grief over losing our son to this illness. It helped me to learn to let go of feeling like we had the sole responsibility for his ultimate outcome.”
Barriers to Family Involvement
The open sharing of information is essential to a good relationship between patients, their families, and health-care professionals. Yet obstacles to cooperation between professionals and parents exist.
Judith Smith
Professionals rely on a medical model that focuses on the patient/professional relationship, often ignoring the needs of family caregivers. Some may even resent family members for “intruding” on the treatment plan, making family caregivers feel as if they are being too aggressive or “pushy.” Family members report that their knowledge—gained from being with the patient 24/7—is often ignored and devalued. Even worse, professionals who are influenced by outdated psychological models that blame families for a child’s mental illness may trigger feelings of guilt in parents who themselves may have internalized these mother-blaming models.
Privacy rules, such as HIPAA, can be used as an excuse by professionals to avoid meeting and sharing information with family members. HIPPA was intended to protect the security of sensitive health information of patients. It was never meant to prevent health care providers from listening to the concerns of family members or to provide much-needed information about the patient’s care. Family members need to push professionals to share information, without jeopardizing the privacy of the patient…
Family members report feeling frustrated that there are not sufficient opportunities for them to contribute meaningfully to their loved one’s treatment plans. Misinterpretation of confidentiality laws and mental health practices continue to exclude families and their concerns.
Most of the women who shared their stories with me had been coping with their son or daughter’s illness for more than twenty years. Many were feeling alone and without support. Family caregivers’ views of their own and their ill loved one’s responsibilities do evolve over time as their understanding of the illness changes. Although many clinical studies extol family support and involvement in treatment and recovery, too many barriers still exist.
Advocacy
A transformative moment occurred for Leslie during a Family-to-Family class offered by NAMI. Pete Earley, the Washington D.C. journalist and mental advocate, was speaking about the many structural problems that interfere with the availability of quality services and treatment for mental illness. “I was sitting there in tears, and anger and went home and made the decision that I would have to give up our privacy to be able to work on changing things…I started to move from hiding and crying, to speaking out.” One of her first actions was to write an OpEd, in the Des Moines Register after a mass shooting, to rail against the typical conflation of this public safety concern with the need for improvements in the mental health treatment system.
Leslie’s phone “blew up.” As a result, she and her husband, got connected to the Treatment Advocacy Center and then to their State Senator. Together they drafted a new bill which he presented to the Legislature. With time, she retired from her job as a physical therapist and became a full-time lobbyist and advocate for improved mental health procedures nationally and in Iowa. She was able to turn her personal grief into action. She has made many new friends and colleagues who have become her new extended family.
About the Author: Judith R. Smith, I am a mother, psychotherapist, professor, and researcher on women’s issues as they age. I am a professor at Fordham University in New York City. Through-out my career, I have focused on understanding how mothers are affected by their children’s development. My previous work focused on young children and how the child’s early development impacted the mother’s sense of self, as well as the ways mothers’ responses and resources impacted her child’s later development. Today, as a senior researcher, my interest is on older mothers and how women are affected by, and cope, when their adult children are struggling with issues that interfere with their autonomy and self-sufficiency.
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