By Terry Fries-Maloy, MSW, LISW
The call came around midnight on a cold night in January 2006. I was only half awake when I answered the phone, having been startled out of a deep sleep. “Your mother just died…” said the voice at the other end of the phone. It was the night nurse at the facility where my mother had been living for the previous several years. “We helped her to the bathroom, got her settled back in bed…and then she just stopped breathing…” The news came as a quite a shock to me, but…to be honest…as a bit of a relief, as well.
As far as I can piece together from conversations I have had with those who knew her before I was born and from my experience in the years my mother tried to raise her children and the years beyond, my mother suffered from serious mental illness most of her life. Was it from a childhood emotional trauma? Or a head injury she sustained in her youth? Or a chemical imbalance? No one really knew for certain, they just knew that my mother was…different.
My mother grew up in an age when mental illness often went undiagnosed and ignored. Few people sought treatment for mental illness. Even fewer understood that most mental illness often does respond to treatment. Even fewer had insurance coverage that would offset the cost of treatment…if treatment options even existed back then. Many people with mental illness were sent off to institutions if there were not caring family members able and willing to provide care for them and protect them. My mother had her family to care for her when she was young and, when she grew a little older, she had my father to try to keep her safe and keep her from being too disruptive to others. Sometimes that kind of support worked, sometimes it didn’t.
My mother was resistant to treatment and I watched her suffer through life with no friends, no interests, no joy. Even after I was grown and moved away from home, after her divorce from my father, when she was alone and trying to make in her way in a world that she did not understand, I struggled to continue to provide loving support to her. As in so many families who have a member with a mental health diagnosis, my siblings, over time, became frustrated and discouraged and, I think, were embarrassed by my mother’s illness and associated behaviors. It was difficult for them to care for someone who had never had the capacity to care, emotionally or physically, for them, so, as they became adults, they withdrew from her life.
As my mother grew older, her condition grew worse. In addition to untreated mental illness, she began to develop signs of dementia. She became more paranoid, thinking people were taking things from her or talking about her. She became more forgetful and had increasing difficulty managing the small Social Security income that she received from my father’s work history. She never had a job of her own, never drove a car. And she moved from apartment to apartment, six different places in just as many years, because she didn’t like or didn’t trust the people around her.
I was barely able to convince her to sign Durable Power of Attorney papers so that I could help manage her bills and her small checking account. I pre-planned her funeral and bought her headstone in advance, knowing that it would be much easier while she was living than when the unexpected call came in the middle of the night about her death. If I had known about Ohio’s Declaration for Mental Health Treatment,* I would have encouraged her to complete that document, as well. And I did what I could to provide ongoing emotional support to her, though she rarely, if ever, acknowledged my efforts.
I just always wanted her to be happy. I always hoped that she would accept treatment and get better. I always wished that she could have developed a loving, caring relationship with someone…anyone. But those things never happened.
I can only imagine the discomfort that she must have felt living in her own world, not being able to let anyone in to comfort her or help her or make her feel loved. I’m sad for me and for my siblings that we could never have the relationship with my mother that so many others enjoy with theirs, but I am mostly sad that my mother had to live a joyless life, a life of isolation and fear.
To those with untreated mental illness, I encourage you to accept treatment–life can be so much better than it is now. To those already in treatment, I admire you and ask you to continue to cooperate with your treatment plan, your doctors, your therapists and your family members. It is a gift you give to yourself and to those around you who love and care for you. To those family members who struggle with the mental illness of a child, sibling, or spouse, I urge you to continue to love them and encourage them. And to those of you who are caregivers, ask for help when you need it, acknowledge and accept those things that you cannot change, plan for the future, and remember to take care of yourself. If each of you does the best you can, you can look back without regret when that phone call comes in the middle of the night …
*Declaration of Mental Health Treatment – a document which allows individuals to state their own preferences regarding mental health treatment and to appoint a person to make mental health care decisions for them when they are unable to do so themselves.