Support systems create the foundation of any recovery. The more diversified the support system, the stronger the foundation. At the heart of some support systems are caregivers.
“In my world, caregivers are typically family members who provide care for their loved ones who suffer from serious psychiatric illnesses like schizophrenia, schizoaffective disorder, bipolar disorder and major depression,” said Kathy Day, founder of the nonprofit organization Pro Caregiver Consultants.
Her journey began in 2010 when a family member developed schizophrenia. Day believed the best way she could support her family member was to educate herself on this lifelong condition.
Unfortunately her initial discoveries were very disheartening. At the time, there were no tests to reveal the specific natures of the illness. Additionally, family members are often completely shut out of the treatment process if the one experiencing the illness is an adult. Treatment can be less effective without the full perspective of the situation. The irony is that family members get admonished for being too involved when their very involvement is so limited.
It was easy for Day to feel powerless when the system prevented her from helping someone who was too sick to help themselves.
There are unique challenges a caregiver faces when their family member has a mental illness. “In no other illness do families have to call law enforcement to help get treatment for their loved one,” Day said. The mentally ill person might be taken away in handcuffs to a facility – which Day feels further criminalizes them, with strict visitor restrictions and having personal belongings searched when she is able to visit.
The added stigma of the nature of the illness is a contributing factor to “caregiver burnout.” With physical illnesses, often community members band together to offer an additional layer of support to the caregivers; however this is not the typical case when it’s a mental illness.
There is such a deep misunderstanding as to what mental illness is and isn’t, including the validity of the severity of the health condition. Caregivers, just as much as those with the illness, need support too. It’s not always the condition itself that amplifies the burnout as much as the fractured system.
Day found the best support was seeking out others in her situation through avenues such as Facebook support groups. Through these private groups there was a feeling of safety to be transparent in her experiences while connecting with others who could relate.
Day learned that certain behaviors she might have found jarring by her family member were actually quite common. There was a strength in shared experiences.
The best advice Day received early on in her caregiver journey was to depersonalize the process. Her loved one is an entire person outside of their illness. There is no blame to be given to either her loved one or herself. “You can hate the symptoms and still love the person,” she said. “You should, in fact.”
Laura Kaponer is a mental health advocate and social media blogger, as well as a volunteer with the local chapter of NAMI. #LauraKaponeris1in5 (as 1 in 5 Americans have a mental illness).