Unseen Family Caregiving

What do you call a woman who is aged 60-plus years, has raised her children, is ready for retirement, and becomes involved (again) in housing and caring for her adult child with serious mental illness or substance use disorder? Some people label her as “co-dependent” or “an enabler.” I object to these labels. Research reveals that for the women who are providing this (often unexpected) late-in-life care to their adult children, the name is “mother” (Smith, 2021).

Most reports on coping with mental illness focus on the person with the condition. Very few researchers also explore the conflicts and feelings of the older mothers who often become the default safety net for their adult children. These older women reopen their homes and hearts to their adult children who are unable to sustain consistent employment due to their bipolar disorder, schizophrenia, or major depression. The studies that do exist document how stressful this family caregiving situation can be. "On pins and needles," "walking on eggshells," or "peace at any price," are evocative terms that have been used to describe what it feels like to be a family member caring for a loved one with serious mental illness (SMI; Gibson, Greene & Whiting, 2016; Hyde, 1997). It’s a large demographic. Eight and a half million older adults in the United States are taking care of family members with mental illness, most of whom are adult children financially dependent on their parents, many of whom also live with them.

My research explored the often hidden feelings of older mothers (>60 years) whose lives were disrupted when their sons or daughters could no longer support themselves due to their psychiatric illnesses or substance use disorders. While fathers are also affected, my work focuses on the experiences of women. I interviewed 50 older mothers, all of whom self-identified as having an adult child whose problems were worrisome to them. There were many distinctions between these women. Some were widowed. Some were married. Some were rich, while others were low-income. They came from different races and ethnic backgrounds. The type and severity of their children’s problems varied. Yet, despite these distinctions, they shared a commitment to mothering that had led them to become their child’s safety net, in the face of a broken mental health system and insufficient supportive and affordable housing. Each explained their situation with this sentiment: “I’m her (his) mother. Do I just throw her away?” But, side by side with their maternal commitment to do all they could to help, these women experienced many feelings that often conflicted with each other. Based on what the women shared with me, I named their situation “difficult mothering.”

Difficult mothering includes coping with many hard issues and questions:

• What is wrong with our mental health and criminal justice system?
• Why is my child so “stubborn” and refuses to take her medication?
• How do I protect my child without hurting myself?
• What did I do wrong that my child treats me with such disrespect?
• How do I handle the disappointment that I feel?
• How do I forgive myself for the mistakes that I made?
• Why can’t anyone suggest a solution that can help me and my child?
• How can I enjoy my later years and take care of my adult child?

In one way or another, each woman expressed how hard it was for her to tolerate the powerless she felt. Mothering an adult child is very different than mothering a young child. Time outs no longer work. Adult children have the right to make their own (sometimes “bad” decisions). HIPAA, while protecting the patient, leaves families excluded from decision-making. The pain of seeing your son or daughter in danger feels devasting. Many mothers living with a troubled adult child’s untreated mental illness experience depression, self-blame, stigma, and helplessness.

If Only She Would Take Her Medication!

The experience of caring for someone with SMI is different from caring for a person who has cancer or another physical illness. Most people with a physical illness want to engage in treatment to get better. In contrast, many people with SMI refuse to follow the recommended course of treatment. They do not see themselves as ill. This confusing behavior is called “anosognosia” by doctors (Amador, 2007). The lack of awareness of the psychiatric illness, often called “lacking insight,” is like the neuro-psychological deficit that is also found in brain-injured patients who are also unable to perceive the realities of their conditions. This difference in perception creates tension and frustration for all. It is enormously frustrating for a mother or father whose son or daughter does not see the management of their illness in the same manner as the parent.

If you are an older mother in this situation, there are steps you can take to address your feelings of helplessness. Become more knowledgeable about mental illness, join a support group and discover that you are not alone, and consider getting involved in changing the laws in your state that currently limit the quality and availability of psychiatric care.