A few weeks ago after making some fifty tiresome and stressful phone calls, I finally found a psychiatrist who would evaluate my daughter. The mistake I had made in placing these calls was that I relayed to the receptionists that my daughter had autism. After being told repeatedly that the doctors don't treat autism (a concept I still don't quite understand), I obtained an appointment only because I said she had never had a formal diagnosis.
We arrived at the appointment and I believe I was the one who had the most anxiety. How do I explain my daughter's behavior yet again? There comes a time when you don't think you have the strength to go through it one more time. He took my daughter in first and talked with her for less than ten minutes. My husband and I were then summoned into his office, and he asked me why she hadn't been evaluated or seen a psychiatrist in such a long time (it had been at least twenty years). I explained that no one has ever been able to help her. She can't go to therapy because she doesn't know and can't articulate what her problems are, those being OCD, Asperger's Syndrome (considered a form of autism), and a low IQ. I told him that I needed to try again to find help for her because she appeared to be getting worse (poor mood, disrespect, depression), and quite frankly by the year 2011, I assumed there had to be advancements in the treatment of autism. Sadly, there are none, because autism is a developmental disorder, whereas other mental impairments such as schizophrenia are bio-chemical.
I tried to explain everything about my daughter. He looked at me and said, “You know your daughter better than most people with these problems, and you need to know that she is not getting worse. You have 'caretaker burnout.' Don't take this the wrong way, but you need a shoulder to cry on, and it's not your husband's because he's living this too. You need someone who has experienced what you have gone through and can empathize with you.”
This was incredulous to me. How could I have caretaker burnout with my own daughter? I knew that I had had it with my first husband, but he was physically sick. He then asked us if we had ever considered going to "nami.” The doctor appeared to be from Vietnam and I pondered why he thought going to Vietnam would be a good idea. I thought better of the question, avoided looking at Daniel (who had been thinking the same thing), and asked what "nami" was. He told us that NAMI stands for National Association for the Mentally Impaired, and they offer support for families caring for a mentally ill relative. I was leery about it but also hopeful that someone there would understand the road I have been traveling for 36 years.
The first couple of sessions were brutal for me, while everyone explained their loved one's mental illness. Most of the people were caring for someone suffering from schizophrenia, depression, or bi-polar disorder. Some of the stories were incredibly difficult to listen to. Countless renditions of suicide attempts, refusal to take medications, hospital psychiatric stays; the list went on. One woman spoke about her two teenage daughters, both bi-polar, and a husband who suffers severe depression. A single mom is taking care of her mother who has cancer and her son who has bi-polar disorder. One day she had to take her mother to her oncology appointment and at the same time her son begged her to stay home, proclaiming, “I really need you at this moment.” She was so torn, but told him she had to take her mother. When she got home the son was unconscious, having taken multiple pills with a bottle of bourbon. I was visibly shaken by this story, but found myself feeling relieved at the same time, because I didn't have this concern with my daughter. I felt sorrow for this mother and secretly thankful I was not in her shoes.
Last week I didn't want to go to the meeting. I felt as if they were causing me more stress than help, but I'm glad I went because something happened at this one which was remarkable. We went around the table and one by one shared what we do to cope while with living with some who is mentally ill. Some people said that they take an hour a day to meditate; some take a deep breath and count to ten when a confrontation is approaching. Some simply detach and walk away from the confrontation, which is something I try to do. I also write in my gratitude journal daily. Sharing these techniques brought everyone closer together and suddenly I didn't feel like the unfit mother I thought I was.
At the end of the table sits a small woman whom I would guess to be in her seventies, bound to a wheel chair. She has short blond hair and in front are three dyed streaks of green, lavender and pink. Her hands are severely gnarled by arthritis, her nails are painted a bright red, and she uses her hands demonstratively as she talks. At the first meeting she seemed confused and severely stressed with her 45 year old daughter, who sounded a lot like mine. But each time she spoke thereafter, her knowledge and keen perception were revealed. When she told us what she does to cope, I was in awe of this woman. She said she thinks about all the people who have left a positive imprint on her life and she thanks them for being there. She also said that you just can't let all the crap around you bring you down. And then she summed it up by saying, “Life is a romance. There is so much love to give and receive in everything we do.”
The people at this meeting are the most impressive people you will ever meet. They share their lives with each other. They would never think of abandoning these loved ones who suffer with their illness. Instead, learning more about them is the most important thing they can think of doing. They have walked through storms that most of us never knew existed, and yet they are able to smile and many still consider life a romance!