By Vivian Malloy
My daughter, Catherine, became visibly ill with schizophrenia at the age of 23. For eight years, she suffered through cycles of breakdown, recovery and relapse. Then, when she finally understood she was truly sick and needed medication, she began to improve. It took many years, the slow process of regaining sanity and self. However, by the time Catherine reached her forties, few people, if any, would have guessed her diagnosis or her challenges.
At the time of Catherine’s first psychotic breakdown, in the middle of a cousin’s wedding, our family lived on Long Island. Besides finding an excellent psychiatrist, our local NAMI chapter was crucial in providing desperately needed support. NAMI offered important information about her condition and treatment while introducing us to other young adults and parents similarly dealing with serious mental illness. Some of us began hosting one another for get-togethers.
These gatherings offered a social life for my daughter and helpful company for me and my husband during crushingly sad years. We shared tips and encouragement throughout the four up-and-down cycles during which Catherine would take her meds, get better, find work/friends, decide she didn’t need the meds and soon relapse. During a second psychotic break after stopping her medication, Catherine attempted suicide. Fortunately, we were able to react quickly, and get her to the hospital by ambulance.
At the local psychiatric ward, she was put on a different antipsychotic medication, which helped, but not enough. Then, because her insurance only covered a month, Catherine was released prematurely. For the next week or so, my husband and I cared for Catherine who was experiencing psychosis. She believed she was being tortured and about to be killed; we had to stay with her night and day, hold her hand, keep trying to convince her she was safe. This was the worst, most exhausting time of my life. But I had to remind myself, it was even worse for Catherine.
We would witness two more heartbreaking episodes. A couple of times during this period stand out. One weekend, I went to a relative’s funeral out of town, when Catherine was clearly not doing well. Reluctantly, I gave into family pressure to attend, leaving my elderly husband to care for Catherine by himself. Afterward, I learned that Catherine (and my husband) didn’t sleep almost the whole weekend. Catherine thought she was being repeatedly assaulted and sobbed with terror.
Looking back, I don’t believe I should have left during that time. But I learned something from this experience: even close family members may not understand what you are dealing with — you must be firm about your own needs. Another time, my son and his wife took my husband, me and Catherine to dinner and a play in Rhode Island, in celebration of their wedding anniversary. Catherine talked all the way north from Long Island, five hours of non-stop talking, and then as dinner arrived, burst into tears. We had to abandon the play.
After the fourth and final breakdown, I told my daughter I didn’t think I could go through this again. Later, she said this statement acted as a wake-up call for her. She agreed — at last — she must be sick and needed medicine. Soon after, she was put on Clozapine. This was a turning point.
The following years offered slow days of slight, but steady, improvement for Catherine. She focused on her recovery, despite the hurtful loss of her chief supporter with her dad’s sudden death. Catherine began doing artwork, taking lessons on occasion and she was able to read novels and watch movies once again. She found part-time work, assisting daycare. Next, she worked at a school for autistic children. This experience, she said, showed her there were others, young children, with worse problems than she had. Eventually she obtained a full-time office position./p>
Catherine and I faced yet another devastating challenge, when we were both diagnosed with serious cancer only three months apart. In the wake of this news, she left her job, and we moved to Rhode Island to be near her brother and his family. The emotional and practical help of Catherine’s brother, sister-in-law and nephews proved invaluable.
Every day was precious. Despite Catherine’s treatments, despite (or possibly because of) the dreaded news that her cervical cancer could not be cured after all, the days had an intensity and warmth, filled with kindnesses and love. Relatives and friends visited, some from out of town, offering stories and cheer.
Catherine continued to have painful panic attacks, and yes, she took a significant amount of anti-psychotic and related medication, but she was determined to enjoy life. I was thrilled that she was herself again. She took up pottery, a passion she’d abandoned after her first breakdown. She produced wonderful tiny paintings.
Tragically, my daughter passed away from her cancer. But I take comfort in knowing she found peace and recovery from schizophrenia before her passing.
You can’t “manage” psychosis or argue away delusion. After her initial breakdown, I thought I could prove to Catherine that the KGB couldn’t possibly be interested in a young woman with no language skills, no knowledge of Russian affairs, no political interests — but of course I was mistaken. Delusions are impenetrable. Professional help is necessary.
You must be firm about putting your own family needs first. Others may not understand how difficult your life is — or they may not grasp your limitations of time and energy. Take advantage of family leave at work, or personal days, whenever possible.
Get all the help you can — including relief through activities you enjoy. I found that being open about Catherine’s schizophrenia was helpful. People could offer comfort. One young friend even offered to stay with Catherine, whenever both my husband and I were invited somewhere special.
Because we were in for the long haul, breaks from caretaking were vital. I played tennis whenever possible — hours when my mind emptied of worry. Reading and writing poetry offered me an alternate world where beauty, pleasure and even joy resided.
Catherine’s life wasn’t easy — and her courage, patience and eagerness to enjoy good times inspired others and still does. Love, I have learned, finds strange places to thrive.
Vivian Malloy is currently retired and lives in Providence, RI near her son and family. She has written and published poems about her daughter while teaching college English.
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