A reader contacted me recently to talk about her mother. I asked her for permission to share her story because it is representative of the emails that I receive each week from distraught family members trying to get meaningful care for someone they love. At her request, I have deleted her name.
A Daughter’s Story
A few days ago, my brother and I sought court commitment for my mother.
We have watched her mental health deteriorate for years. It has been incredibly sad and frustrating, to say the least, and we have tried again and again to help her.
She believes the government and others are spying on her because her blood holds the cure for cancer and that pharmaceutical companies, the government and her family are making millions off her. She has not been easy to be around, many times accusing family and friends of conspiring against her. Her thoughts have become increasingly disoriented and dominate her daily activities. She changes her cell phone, email and locks regularly. She sometimes wore a patch over one eye because she believes a lens was implanted through cataract surgery, to prevent the government from seeing all she does. Her days are spent at the Apple Store, AT&T store or going to the FBI, Police or local attorneys so she can report the conspiracy or seek help fighting it.
In her own words, my mother says she exists in a “living nightmare.”
Encouraging her to seek treatment served only as an insult to her. Efforts at logic to show how her theories were impossible went nowhere. She refused to believe she had a mental illness or delusions, so she told us and the Psychiatrist who she finally agreed to see. Though she took medication for depression and anxiety, she ended up telling us she wanted nothing to do with us as long as we believed she had a mental illness. This was “real” and she wanted us to help her file a lawsuit because her case was “big.” When we told her we couldn’t fight something that wasn’t happening, she wanted nothing to do with us.
My brother and I are hoping the decision-makers will see that the conspiracy beliefs that caused her to cut hot wires inside and outside her home and to tinker with a neighbor’s air conditioner will be enough to show “threat to self/others.” She cut the wires so the government couldn’t spy on her. She scared the neighbor by cutting off their AC and telling them to turn off her porch lights so the government couldn’t find her home to radiate her. She was sleeping on the floor downstairs to protect herself from the radiation. Previous to that, my mother went to live in a hotel for a couple of weeks because she believed her neighbors were spies.
She needs help.
Today, I am reporting the results.
She was involuntarily committed for treatment, but sent to a treatment center that let her out after a few days. We were shocked. We still are in shock. “Reckless” was my brother’s response. We were kept in the dark because our mother was angry with us and the center’s HIPAA interpretation barred us from providing collateral information. My brother asked the name of the psychiatrist and upon learning of my mother’s upcoming release, I called to provide collateral information. I was told, however, you could only leave voicemail and no return call would be made.
I am left with questions, frustration and a real sense of powerlessness. I am not writing today with a sense of hope.
Does the center not realize that it was her refusal to take medication and see a psychiatrist that landed her there in the first place? That they have created a swinging door for future treatment visits, next time, possibly through the criminal courts?
Did the psychiatrist know that my mother offered Power of Attorney to a manager at an Apple Store? Or that she went missing for five days wanting to die?
How can the court expect a medical expert to assess and diagnose a person who would withhold information based on a conspiracy-oriented state of mind? How can a psychiatrist expect her to take medication when released if he didn’t know she refused medication before?
HIPAA silenced her family such that contrary to our wishes, she was sent to a treatment center instead of a hospital where there would likely be more sophisticated diagnostic machines (such as an MRI), which is relevant because of her stroke history. Additionally, we weren’t able to discuss family history of mental illness.
Guardianship. That was the response I received from a mental health call center when I asked for advice. He said, “So, you want her to be force medicated?” No, I want her to have her life back and get help and not end up in the bad places where people with untreated serious mental illness often end up.
Weeks later an update: After the treatment center release, my mother moved out of her home into an apartment (because of her belief that the neighbors were spies). Yesterday, the police came to find me and notify me that my mother is approaching her apartment neighbors and asking them if they are working with the government, also telling them not to come in her apartment and do studies on her. The apartment manager said she is scaring the neighbors and wishes she would get help. They were regretful to mention that more complaints could result in loss of tenants and eviction.
I told them and the police, we have done everything we can do.
There is frustration with a system that doesn’t work. And blame for the treatment center and in particular the treating physician who should have seen that without court ordered medication, this was going to happen.
If the apartment asks my mother to leave, where ultimately will my mother live? And what ultimately will happen to her? This is all why we wanted to get her help.
Left with Questions: Threat to self or others and HIPAA. The inability of a treating physician to properly treat without all available medical history. Humanitarian questions and a patient’s rights, including a voice and opportunity to collaborate with treating physician. A Mother who will only take medication with a court order. Potential for homelessness. Problems of guardianship.
We can and should form “more perfect” laws and hospital policies.