During the first year of trying to get help, I never felt my concerns were being taken seriously by my local hospital. My son presented as a very articulate and together young man. I think partially because psychiatry is so difficult to access in community hospitals, they were almost eager to only see his stability, rather than listening to the insight and gut intuitions of a mother. If they listened and believed me, they would have to come up with services for him.
By the time we finally came to the CAMH emergency department, I was advocating very strongly and basically demanding they find psychiatric follow-up for my son. I apologized for my forcefulness and explained we were tired and at our wits’ end and just could not tolerate inaction any longer.
“You have absolutely nothing to apologize for,” the resident told me. “You love your son and I would wonder what was wrong in this situation if you weren’t advocating strongly for him.”
That really made me feel they were listening and valued my input. Working with the team at the Slaight Centre Early Intervention Service, I am always thanked for my input and told how helpful it is. I think thanking supportive and involved family members and reinforcing to them that their involvement is important is vital. It’s surprising how many families really don’t know if their involvement is helpful or appreciated. Particularly with an emerging adult, sometimes you can feel you are being a “helicopter parent” and aren’t sure where your place is.
By the time mental health care providers see patients with their families, they likely have been dealing with these issues for quite some time. They have faced the frustration of trying to get help and have dealt with crisis after crisis without support. They have had to deal with societal prejudice and judgement.
I think the majority of families do understand and appreciate the similarities between mental illnesses like bipolar disorder or schizophrenia and physical illnesses. They absolutely are diseases just like diabetes, cancer and heart disease – but they can be far more difficult illnesses for families to cope with because they have had to deal with their loved one’s behavioural changes, personality changes and possibly bizarre, frightening and risky behaviours.
And all of that without the access to treatment and support that is received by those suffering from physical illnesses.
Mental health practitioners know, and research proves, that a supportive family increases the chances for recovery. But families are suffering immensely and the demands on them are unlike most other diseases. Families need to be supported, educated and listened to. Letting them know they are a valued part of the team can be empowering for families at a time when they feel completely helpless.
Through courses and groups offered at CAMH, I’ve had the opportunity to connect with other family members and this community of people have become important supports for me. It is encouraging to me that CAMH has developed a way for families to receive support and connect with one another through the Office of Family Engagement. We need to continue to develop ways for loved ones to feel connected to peer supports as well as their loved one’s care teams.
Yes, we need to advocate for patients – but we also need to advocate for families and their needs for support, because they are integral to the patient’s recovery in a way that does not exist in most other health illnesses.
CAMH’s Office of Family Engagement helps families navigate the system with information and a voice. The Family Advisory Committee brings the diverse voices and unique perspectives of families as partners in care to CAMH. The Family Resource Centre provides families with a safe, quiet space with access to information on mental illness and addiction, treatments and CAMH and community resources for families. Email us at Familyengagement@camh.ca, call 416-535-8501 ext 33202 or visit www.camh.ca/families.
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