Most of us who care about and look after our mentally ill loved ones do so in obscurity and silence. Why share the burden of this roller-coaster journey you’re on? Why let anyone know, much less admit to yourself, that this is one tough job? During a recent episode with my son, I often felt as lost as he was as I struggled alone to cope with his disturbing behavior.
Being there for my dual-diagnosis son, Michael, during a recent homeless period that lasted somewhat over a year turned out to be incredibly stressful. I was helpless to pull him out of either his mental disorder or bingeing behavior, and yet I felt so responsible, so very guilty. He had no fixed location, no place I could see him, even if I could drive out of town. My caregiving duties for my husband have kept me homebound.
His phone calls tortured me as he described the horrific conditions he was enduring on the streets. Hunger, cold, theft, and violence were everyday events. Mike discovered nothing was safe, neither a person nor a belonging. Even temporary drop-in shelters harbored dangerous people who attacked the vulnerable, stealing their property and beating them up. The police harassed him when he was sleeping in parks, under bushes, and inside doorways. No place was safe. Everything he owned, even his medicine, backpack, pillow, and food, had been stolen. My son was bereft of support and hope.
My finances allowed for only a few hotel nights, where he could get out of the cold, shower, and have a warm restaurant meal. But the costs ran up, and, unknown to me, Michael was using, surrounded by street people, most of whom were addicts as well. He found human connections sharing alcohol and drugs, but these substances exacerbated his mental health symptoms.
I watched from afar as my son slipped further and further into an untrustworthy person, lying to me about his activities. The hotel stays usually turned out to be “parties,” where addicts gathered, shared drugs, and generated unacceptable noise. In my guilty state, I capitulated to his constant demands for money, which I thought were for nourishing food and winter clothes, but in reality, I paid for drugs.
At one point, Michael became deathly ill at one of these “party” events. His street buddies vacated, leaving him gasping for breath. My intuition served me once again. When I couldn’t get him to answer my call, I called the motel’s front desk. Kathy, the sole staff, rushed to his room to check things out, took one look, called an ambulance, and 15 minutes later, he was rushed to the hospital. My son later reported he was diagnosed with pneumonia and had a fever of 105 degrees. It was too close a call.
After his hospital release and with my encouragement, Michael began looking for more permanent shelter, one that would assist him in his struggle with mental illness and addiction. After waiting for a case manager for months, he finally found a secure shelter and, with good behavior, was referred to a high-end shelter with programs for both mental health and street drugs.
Did I seek comfort for my agonies during the time my son was lost? At first, I endured. It will go away, I thought, as I tried to cope in my denial state. I felt ashamed that Mike had used me with his entreaties: “Can you give me a hand, Mom?” “I’m flat-out, Mom.” “Send some money right now.” I believed at the time it would all go away and my son could rise from his ashes and be normal again. But the stress did not stop, and I began my burn-out loop: stress, isolation, exhaustion, collapse. I found myself constantly fatigued and sporadically weeping. Where can I turn? Who can I trust to share my story?
Chatting with a friend one day, she talked about the “courage to change.” It was an offhand remark, and I asked her how she maintained her balance during a family crisis. She spoke further, offering ideas like “detachment” and “peace of mind.” Once I joined the Twelve-Step program, I began setting boundaries and learned to say “No” to his demands. That was my son’s cue to cut out the “parties” and seek both sobriety and more permanent shelter. I had been enabling him all along.
I am spreading the word, “I am a caregiver.” The words feel good and remind me that I have a responsibility, not only to love my son but also myself. I also confronted the fact that I am powerless over Michael’s addictions, and I must learn new ways of relating to him.
I am taking the advice of Archangels CEO Alexandra Drane, who offers suggestions about what caregivers can do to lighten their load. *
· Get credit for it. You can more readily navigate to resources when you acknowledge your caregiving role and practice self-compassion.
· Gain support from family and friends. Caregiving is work; recognizing this helps you contend with the stressors you feel as a caregiver.
· Have language for what you’re going through. Tell your story to as many people as possible. You will be surprised how many people respond with sympathy and understanding.
· Seek out supportive resources, such as a social worker or therapist. The National Alliance for the Mentally Ill (NAMI) is a great starting place for information and support.
· Support other caregivers, “you give a lift, you get a lift,” Drane says. This helps you normalize your work and eliminates the stigma. “if you do something kind for someone, you feel better yourself.”
* “How Identifying yourself as a caregiver is the first step to tackling the stress of the job.” Marissa Brown. April 5, 2023.