Are you the parent of or know someone who is the parent of an adult child with schizophrenia or Schizoaffective disorder? How did you respond to that diagnosis? What if your son or daughter was a stellar student with gifted abilities and one day lost her hope for a bright future because of a chronic mental health condition? The stress and strain that you would feel might almost take all the life in your soul. In fact, it might cause you to question why. I’m sure Sharon (seen on the right) has been through this process many times in her life.
Many parents who are struggling with a child, adolescent, or adult child with a chronic mental health condition go through a series of emotional and psychological challenges themselves. It’s difficult just trying to accept the diagnosis, treat the illness, live with the symptoms, help a loved one cope, and avoid stigma. Sharon Page knows exactly what this feels like. She not only observed her high functioning daughter slowly deteriorate overtime, but she also struggled with the thought of stigma and social stereotypes.
Let’s listen to Sharon’s story:
Most families experience great stress, confusion, and uncertainty when a family member experiences a mental illness. Could you please explain the beginning of your journey and how you accepted (or did not accept) the diagnosis? Tell us about your journey.
My journey began close to 4 yrs ago with my 24yr old daughter initially diagnosed with Schizophrenia, thought then to be adult ADHD & depression. Recently her diagnosis changed to schizo-affective disorder with psychosis and depression. She is considered high functioning: no episodes of erratic behavior, no hospitalizations, and no violent behaviors. She has been on and off meds since her first official diagnosis, resisting still in denial.
She was a stellar student throughout her youth, gifted and talented by 5th grade. She participated in the John Hopkins Gifted & Talented Program in 7th grade (where she scored 960) and 8th grade (where she scored 1100) on the SAT. She maintained in the top 5th percentile of her class, taking her first AP class in 10th grade and later in the 11th & 12th grades. She was always an introvert and never really developed social skills much like the average preteen. She spent most, if not all of her youth, entrenched in her studies which would make any parent proud. However, you also want your children to be well rounded and thrive in all aspects of life to evolve into their best selves. She was accepted at several colleges with Carnegie Mellon as her first choice. She ended up at The College of New Jersey. It was this first year away at college when the bottom fell out.
Our lives have since forever changed and it has been an uphill battle and struggle for the both of us. It seems the traumatic event that brought her illness to the forefront was the untimely tragic death of my only brother. As a single parent of two daughters, my brother was a male role model and support system for her.
What was the most difficult part of this life change for you and your family?
The most difficult challenge for me has been to watch the bright daughter I raised slowly change. She struggled. She eventually lost grasp of the one thing she always had control over, her academics. She had always been an honor student (never having failed a class) until her illness began to infiltrate her life and deteriorate her brain.
What makes a mental illness difficult to accept? Is it stigma? Is it denial? Is it lack of knowledge about what causes mental illness?
Another challenge for me has included becoming estranged from my own child. Feeling isolated and disconnected from her. Stigma certainly has heightened my sensitivity concerning mental illness such as the lack of education and societal views that stereotype people in ignorant and degrading ways. For some, it may be denial or fear of what others will say or think about a family member’s illness.
We all have been shocked by the multiple stories in the media, in our communities, and on the news about acts of violence at the hands of someone with a severe and untreated mental illness. What are your thoughts about this? What needs to change?
The media is a business whose primary focus is to make money and report the news that will gain the most attention for ratings. People immediately prejudge not knowing the facts and draw their own conclusions. Most media outlets change headlines to obtain the “shock effect” and tend to report speculation. Some neglect to report statistics rather than immediate associate violence with mental illness. Some cases involving violence are isolated events.
How did you approach finding services within the system and was it easy or difficult?
When my daughter started to decompensate and she could no longer mask or manage her illness her first year at college, she asked to see a professional. I have to say our experience was truly blessed. Having a best friend who is a PhD and who had been my sounding board throughout the years, gave me enough insight to seek help. Another gift was having worked in the healthcare profession already, which resulted in resources being at my disposal. To boot, being Recruiter for Behavioral Health and Psychiatry for the past 14yrs afforded me experience and education professionally and personally. I initially did not want to use the services of my employer for obvious reasons. Fear of judgment consumed me. I did a Google search and came across a PhD with the background and expertise to do a psycho-social and battery of tests over the course of 3 weeks before he made a preliminary diagnosis of schizophrenia. His referral was to see a Psychiatrist for further review and treatment.
What was the hardest part about working with the system?
The hardest part as an advocate and primary caregiver of a young adult is HIPAA in New Jersey. While it is extremely important to protect the privacy and rights of anyone with an illness, it is more imperative for those with mental illness. Once recorded and documented with the patient’s consent, the barriers need to be somewhat relaxed as to not neglect the patient’s best interest. Wrap-around services designed to link services for the ill family member are broken. Caregivers navigate these services on behalf of their family member who is incapable. Tracking of records are rarely linked accordingly and need major improvement.
Did you feel supported by the system or did you feel services were all about “business only?”
I felt support the more I showed up as a participating parent who was well versed and knowledgeable. With most services I encountered, it was definitely more about the business of pushing medications and billable hours than caring for the needy.
Were resources offered to you or did you have to ask questions and do your own research?
Although I had resources readily available, services were not easily mapped out without hiccups along the way. The challenges I encountered made me more determined to advocate until my daughter’s needs were met.
How about your overall outlook on life, how has that changed?
My nature has always been one of a caregiver as far back as I can recall. Compassion, empathy and giving to help others is my calling, something I believe more now than ever. My outlook on life is to never take your gifts for granted. My experiences have not so much changed my outlook as it has heightened my awareness to be more driven to advocacy lending my voice in support of mental health and wellness education.
The mental health system slights families in a lot of ways by not allowing the most important family members access to healthcare records or treatment information. For many families in the U.S., the parents or guardians are not permitted to access information about treatment without the patient’s permission. As a family member, do you feel you are a valued piece of the puzzle or do you feel you are treated with a long handle spoon?
After several attempts at different programs, there was one outpatient program I was impressed to learn about (their mission, vision and values) on family participation. It’s invaluable when you have a caregiver who is able to be on board throughout the entire process. Mental illness not only affects the patient but the family and care-giver as well.
Did you know that in some states in the U.S. a child who turns 14 or 16 can make treatment decisions and reject treatment? How do you feel about this?
This is very unfortunate and counter-productive. It pains me to think of families who do not have the wherewithal or tools to help their ill family members navigate services, rely solely on local agencies, and patient caregivers.
Can you provide us with three things you think needs to change in the mental health system?
- Streamline electronic medical records and/or better manage patient records to ensure all linkage and wrap around services are working from the same records.
- Awareness & Education across the board, especially in the school systems.
- Revamp of treatment facilities, voluntary, involuntary, inpatient and outpatient alike.
In a perfect world, mental healthcare, medication, treatment, and services would all be free. What is one essential thing you wish were free for your family?
What encouraged you to start a blog, begin tweeting, and sharing your story in social media?
My first experience with social media began in my own search for support groups on grief and loss of a sibling. I met a group on beliefnet.com which became apart of my healing process along with a year and a half of therapy and medication for depression. Shortly thereafter I gained a strong following.
Tell us about your social media and some of the things you have done to bring awareness?
I have always been one of transparency and authentic throughout my life experiences. It’s very rewarding sharing my strengths, hopes and experiences as well as therapeutic. I have since formed alliances with several organizations in my area to educate myself and family on mental health. I am member of NAMI and went through a 12 week Family to Family class on mental illness, medications, support services and self help. At the completion of my class I became a facilitator where I attended an extensive training program. I taught my first class earlier this year. I had also been active with the Mental Health Assoc in my county. I subscribe to several major publications, newsletters and online groups to maintain current with education, support systems and networking.
Sharon Page’s Biography:Professional Healthcare Recruiter in Behavioral Health & Psychiatry. Sharon identifies as an advocate and caregiver who desires to be useful in contributing to the education and empowerment of individuals and their families. She shares resources and links families who are impacted by mental illness to services. By helping others, she believes “we are also giving to ourselves. Our own lives become richer as a result.”
Sharon, thank you so much for sharing your story and perspective with us. It’s always difficult for a parent to share stories that expose their deepest hurts or challenges. So I applaud you for sharing so bravely. I wish you and your daughter all the best.