By Linda Snow-Griffin, Ph.D.
This month marks my son Jacob’s 22nd year with schizophrenia. I am happy to announce that he has been one of the fortunate people who achieved the American Psychological Association's definition of recovery: good health, a stable home, meaningful work and community participation. Does he still carry remnants of the illness? Yes. But he is living an independent, productive life that was seldom possible 60 years ago.
Along the way, my husband and I have learned critical lessons about caregiving as we navigated this journey with Jacob. Even as a psychologist, I had much to learn — not only about schizophrenia, but about ways in which caretakers can be an important part of the recovery process. While my husband and I do not claim to have all the answers, we believe that what we have learned could be helpful to other families coping with the challenges for caring for a loved one with mental illness.
If possible, you’ll want to be an active participant in your loved one’s care. It is very common, now, for mental health professionals to include family members in the recovery process. Research shows that family support both aids recovery and can even prevent frequent relapses. Being part of the treatment team does not mean that you will attend every therapy session or that your loved one does not have the privilege of keeping some parts of their treatment private. It simply means that you have an opportunity to learn how to best promote the healing process and what role you can take in your loved one’s treatment plan to improve their experience. This could mean providing informed emotional support or taking on more logistical tasks, depending on what your loved one needs.
One specific step that a family member or caregiver could take is to create a timeline and treatment log. Since someone with a serious mental illness (SMI) may need medical and psychological care throughout their lives in various degrees of intensity, doctors or therapists may retire, move or change agencies and insurance plans. Having a timeline to carry with you from one mental health practitioner to the next with information about medications, side effects and behavioral interventions (including what worked or did not work) could be useful to the new team member.
We quickly learned that caregivers need support from a like-minded community. Simply put: Find a support group for yourself. My husband and I greatly benefited from NAMI's Family-to-Family Program, which connected us with other families navigating the challenges of mental illness. There are plenty of other support group options as well, many of which are virtual for those who are conscious of COVID-19 exposure. Ultimately, we found that contact with other families going through similar experiences can break the isolation that so many of us feel while coping with a family member's mental illness.
Even now, some of our friends and family still do not understand mental illness, and it helps to be around those who truly do. A group can offer a place to share your sadness, frustration or good news. And it also needs to be a place to find good ideas and strategies for coping as a family. To avoid burnout, you need a place to express your feelings and people who may be able to help you find new directions to assist you and your loved one.
Our family learned that it is often helpful to celebrate any positive changes that you observe in your loved one's symptoms or behaviors — whether the improvements are big or small. Sometimes this can be challenging, but it is an important perspective to cultivate for everyone’s emotional well-being. For instance, maybe your son is brushing his teeth again; perhaps a strange thing to celebrate if he is 20 or 30 years old, but this small change could be an important step for him to start practicing self-care again. Or maybe the newest medication has finally eliminated all negative voices — a big change to celebrate. By recognizing the small and the big accomplishments, you can highlight the hope (and even joy) in the recovery process.
Truly, hope is what allows us to move forward. Because schizophrenia can be a complex and confusing illness, looking for rays of hope along the way is essential. I wished that I had known 22 years ago that Jacob would get better. That he would find happiness — and so would we.
Having hope isn’t naïve; treatment for SMI is improving over time, and we are constantly learning new information. 60 years ago, options for people with schizophrenia were, quite frankly, dismal. Most were either hospitalized or heavily sedated with medication. Thanks to newer medical and psychological treatment approaches, 60% of people with schizophrenia achieve a level of recovery that allows them to lead productive lives.
While we have a long way to go in terms of learning the origins of this illness and meeting the needs of those living with this condition, opportunities have greatly improved. Science continues to identify new medical approaches and mental health advocates are working hard to change social and political structures — paving the way for a world in which we are not burdened by stigma and limited access to care. With this momentum, the future looks bright.
Linda Snow-Griffin is a retired psychologist, mental health advocate and mother of an adult son with schizophrenia. Her book, “Hope and Learning: Our Journey with Schizophrenia,” describes her family’s experience with schizophrenia and includes information about the recovery process, stigma and families’ needs.
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