Sometimes it’s not just patients who need help to understand the health system; families and friends doing their best to support loved ones need help too.
This was the case for the Holland family when their daughter’s mental illness brought the family in contact with the mental health care system.
In their daughter’s second year of university, they had to bring her home. She was no longer able to function, no longer able to mask what they now know to be a serious mental illness. She entered hospital fully psychotic and afraid – afraid to talk about what she was experiencing – the voices, the hallucinations; afraid and denying her need for help; afraid of what her family and friends, would think; afraid of what this would mean in her life. What she didn’t know was that the family was also scared, afraid and in need of help.
“We had no idea what questions to ask or where to go for answers,” says Christine Holland. “We needed help navigating the complex and disjointed mental health system so she could access the care she so desperately needed, while at the same time struggling to provide care for ourselves and our other children.”
“After numerous years in the system, we arrived at Ontario Shores exhausted, frustrated, angry; uncertain of what was to come. We had a gut wrenching fear that our love and quickly eroding resilience might not be enough. Our hope was floundering,” says Holland.
Holland found her family’s experience was not unique as she became acquainted with other parents and family members struggling to come to grips with their loved ones’ mental illness while trying to find support in the role of caregiver.
Out of this experience and that of many others, Ontario Shores initiated a Family Council in 2009 in response to requests from families for a support mechanism that could address their needs and help answer their questions. Ontario Shores recruited family members to establish a Family Council in May 2010 and the Council officially launched.
The role of Family Council is to be a voice for all families and to help make the journey to recovery as positive as possible for all involved. When the idea for a visiting room for families within the hospital was advanced, Ontario Shores and Ontario Shores Foundation were wholly supportive.
It soon became apparent that a visiting room alone would not meet the needs of families. The family council members knew from personal experience that families of patients feel acutely isolated and are often afraid to speak out in their community and workplace due to the stigma associated with mental illness.
Together, the Ontario Shores Family Council, Social Workers Council and families researched and reported the need for system navigation tools, access to timely and accurate information and education. They revealed there were few services and supports available to families in the region, and that mental health system navigation tools as well as education on topics such as diagnosis, medication and side effects, therapy options and crisis management were badly needed.
A Family Resource Centre was the answer. It would provide families with a warm, welcoming place to receive support from one another, learn together, and develop strengths and coping skills in order to sustain hope, wellness and recovery for their loved ones and themselves.
In September, Ontario Shores opened its new Family Resource Centre designed around programs and services to enable families and friends to deliver the best possible support with access to the staff, volunteers, the latest research, educational programs, groups and one-on-one counselling within a safe and supportive environment.
The new space includes private office space, a common area for families, children’s play area and a room for teens equipped for wireless connectivity and music. A “family room” within the Family Resource Centre includes an eating area and a kitchenette, where families can visit with their loved ones in a less institutional and more relaxed setting.
Ontario Shores realizes families play an important role in their loved one’s journey of recovery. “We have identified the pivotal role of loved ones and have integrated them into the recovery process. We believe the opening of our new Family Resource Centre will help manage the challenges of this journey for families and enhance their quality of life,” explains Karim Mamdani, President and CEO at Ontario Shores.
“The Family Resource Centre will provide families a space to help other families through programs that foster family-to-family networking and support. Families who have lived the difficult journey have the unique perspective to offer emotional support and knowledge to other families who are also navigating the system,” says Holland.
The Family Resource Centre is located at Ontario Shores and is open five days and one evening weekly. For more information, contact Ontario Shores Family Resource Centre at 905.430.4055 ext.6970.