Who are the Caregivers?

*The following data comes from a foundational 2016 study entitled On Pins and Needles: Caregivers of Adults with Mental Illness.

Most caregivers are women around 54 years old. They are usually caring for a relative--nearly half are their own adult son or daughter. They typically live in the same household or nearby. There's a pretty good chance the people they care for are financially dependent on them. If the person is a man, he is likely to experience schizophrenia (35%), had at least one arrest (45%) and/or may have a substance abuse issue (33%). One quarter of them will have been homeless at some point.

If they are female, there's a good chance they are depressed (27%) and/or have a diagnosis of anxiety (14%). Many have substance abuse issues (23%), have been arrested (19%), and also been homeless for some period (16%).

Almost always, these persons are relatives (80%), with half being a son or daughter between the ages of 18-39 years old. A third of caregivers tell us they have cared for their loved ones for at least ten years or more.

“He developed schizophrenia in his early teens. It took years for anyone to make the correct diagnosis, despite the fact that I paid out of pocket for multiple evaluations."

“Right now my son finally has the [right medication]...It took us almost four years and three suicide attempts before getting to this point. ”

“My son was often discharged from the hospital before he was stable on medicine.”

“We have been turned away from local hospitals twice while my son was psychotic and seeking help, because there was no psychiatrist on staff and no available beds. At one hospital a staff member advised me to take my son home and call police if he got worse. This was terribly inappropriate for a medical problem.”

"Caregiver" isn't the best term because it describes people in terms of what they do rather than who they are. In reality, they are mothers and fathers, sons and daughters, neighbors and church members. They might be the coworker who always seems to come in late, be on the phone, seem stressed out, or have to miss work--again. From our perspective they may be unreliable or inconsistent, but the truth is they might be on the phone with a doctor, insurance company, or police. Maybe their son keeps calling to talk about his delusions. They will miss a lot of work due to the unpredictability of daily life in their home.

They could very well be the person who keeps missing church or Bible study. When they do attend, there's always a look of stress or exhaustion on their face. Maybe they spent last night in the ER with a daughter who tried to take her own life. Or perhaps they couldn't sleep because their manic son was insistent on baking at midnight with music blaring until he wanted to barge into their bedroom at 3:00am to tell them about his dreams of being in a band.

One of fear Caregivers have is that their loved one cannot find a medication that helps (54%) or they will refuse to take it (30%). The biggest fear is that when left alone, their loved one may engage in self-harm (68%) or take their own life (65%).

"We spend our time trying to get him into programs, doing paperwork, and generally trying to navigate the system, mostly with little success.”

“Service providers expect the caregiver to complete a large bundle of forms which one tries to do after work, in between fixing dinner, cleaning house, doing laundry - and sleep! The paperwork burden is complex and daunting!”

Their lives are on constant alert, struggling to manage an illness that most people aren't familiar with, battling the stigma of having "a crazy" son or daughter, navigating overwhelming systems like insurance companies, legal systems, and medical terminology. They are overworked, mentally and physically exhausted, isolated, and oftentimes invisible.