We Grieve for the Living
by Catherine J. Rippee-Hanson
Some members of supposed support groups on social media will argue that afflicted loved ones with mental/brain disorders should be abandoned or cut off from family members due only to their age or even how much trouble the family has suffered. The affected must now learn to care for themselves, they say. There's a part of me that wants to scream or cry... knowing that most of them can't. Family members struggle, and I understand. There is no doubt in our family that this is true. It upsets me though when the first post of a frustrated family member is told by dozens of people to just cut them off...let them go...move on...forget about them...they are a lost cause. I do understand the horrors that family members endure. All the families that I know who have loved ones with serious mental/brain disorders have experienced those horrors, especially when those loved ones lack insight or are untreated.
My heart goes out to those who are new to those support groups. Their own need for support and lack of knowledge about serious brain disorders may lead to venting about their problems understandably, but they are sometimes led down the wrong path. I know how stressful and traumatizing it can be to try and help a family member for so long, and the pain it can cause. If our loved ones become angry or hurt family members, I know how traumatizing that experience can be. It is sometimes necessary to step back and hope that professional help will intervene when a person is out of control or clearly psychotic, or physically harming their family. I know the feelings of helplessness and hopelessness that overcome us...the anxiety…the depression. However, I feel that relating to the family members, offering support, self-care, encouragement, and resources... you know - real support for the whole family - would be much more beneficial.
Even friends, colleagues, neighbors, and extended family members won't understand if they don't want to. Down syndrome families, ADHD families, and cerebral palsy families are not encouraged to distance themselves from their affected children. People who have Parkinson's disease, dementia, or Alzheimer's are not thrown away. In our society, the narrative of "behavioral health" has desensitized people in an attempt to sanitize the stigma of serious mental/brain disorders. As if an individual suffering from severe mental disorders/brain dysfunction could have the symptoms trained out of them. This is something I read and see all the time. And it is wrong.
The people we love cannot be trained with rewards or punishments like Pavlovian dogs. Bribery may, on occasion, resolve a tense situation, but it isn't what will improve the condition of our loved one's illness. Despite this, even psychiatric hospitals for severely mentally ill/brain damaged patients use this type of behavioral therapy. Positive reinforcement of behavior can be beneficial for people who are learning daily living skills along with medication and treatment, but it may not be an effective remedy for people who are severely, seriously ill. This kind of expectation is very unfair to those suffering from brain illnesses, who are incapable of controlling hallucinations, voices, and psychoses. An individual with serious mental illness is not the same as someone who refuses to conform to social norms.
Every day, families are faced with extraordinary circumstances beyond their control. Some people may not be able to find a safe place or anyone who cares about them. Many people with significant mental illness or brain damage lack insight and are not aware how to ask for or accept help. What help is available to them. Imagine how much it costs to be sick in this country, and what it would cost if you needed long-term medical care. Because that's what many of them need.
For those afflicted and for family members who love them...it's not easy to survive the struggle and not lose yourself. Focusing tenaciously on solutions while railing against pervasive ignorance is discouraging. It triggers a lot of emotions. The refusal to give up on their loved one may result in PTSD, depression, and anxiety in themselves. Families of individuals with severe and persistent mental and brain disorders are often judged and accused of not doing enough on the one hand... and doing too much on the other... while they struggle to provide care and treatment. It is especially frustrating when others reinforce the belief that the disorder is a behavioral health problem.
As much as we love our brother, Mark, we know we must maintain a balance to have a quality of life and keep sane. You must strike a balance...not choose one or the other. There is no denying that wading through the indifference, apathy, and convoluted legal and medical perspectives regarding serious mental/brain disorders is a full-time job. Sometimes it is for more than one person. A person who suffers from a persistent form of schizophrenia, bipolar disorder, or schizoaffective disorder without insight needs 24/7 supervision and help to ensure they don't hurt themselves or others. In doing this, they avoid the "danger to self or others" standard that must be met before involuntary treatment, LPS conservatorship, guardianship, or placement for care is authorized. The kicker is that to meet that standard - they must have attempted to harm themselves or others, committed a crime, or expressed verbally at the moment in time of their psychiatric evaluation - that they intend to harm themselves or others.
My brother, for example, has tried to commit suicide dozens of times. Serious attempts. He is blind, severely physically disabled, disfigured, chronically ill with multiple health problems, and has schizophrenia or schizoaffective with bipolar disorder and psychosis as well as, lack of insight. He also has been homeless for the last 14 years after being evicted from a Section 8 program apartment where he had an IHSS provider who helped care for him. Although my twin sister and I have done everything possible to get Mark into safe housing of any kind... we have been told there is none in Solano County. Conversely, a few have said they were going to apply or had already applied for new housing assistance or IHSS on his behalf... but they lied. Can you imagine how frustrating it is for family members to try to manage a situation like this? And the worry about what might happen to a loved one you don't have legal authority over?
SSI and Medi-Cal benefits have been halted for my brother... months ago. He couldn't manage the responsibility of reporting to them for the annual re certification, so was cut-off. Following my blog, you know that my brother is a danger to himself regardless of whether he meets the legal standard. Despite that, the last two years have brought horrific, traumatic consequences. At two different times, my brother was struck by two different vehicles while walking blindly into the street.
In September of 2019, he sustained a critical head injury, which went untreated for two weeks due to his lack of insight, when he told the officers that he didn't need to go to the hospital. In an instant, his reply was accepted, and they left him crying on the sidewalk in pain. Like an animal, once injured goes off and hides, he fled from the scene and hid somewhere...nowhere... enduring pain until he was found two weeks later, and we were able to convince him to go to the hospital. The impact of his head striking the pavement caused an abscess to develop in his brain. To drain the abscess, he required immediate, emergency brain surgery and spent a month in the hospital where still no one listened to our family about his psychiatric problems and in fact, shut us out of knowing anything about his care.
As a community, we pitched a collective fit and objected to the hospital's plans to put him in a taxi once released. As a result, his "safe discharge" was changed so that he could spend 30 days in a local board & care home. After 20 days and having been quite disruptive in the home without any attendants, no medical staff, or any mental health services, he told them he was going to leave. Due to no security, and despite being blind, he threw everything over the fence in the backyard and took off across a field to a nearby highway where somehow, he boarded a bus and disappeared in another city 25 miles away. The social media community found him eventually, and it took two months to persuade him to return to his hometown so we could better assist him. Laura's Law was filed by our mom to be applied to Mark, but Solano County rejected it. There is no protection or assistance for the most vulnerable.
In February of 2020, he was struck by a second vehicle shortly after returning to Vacaville, CA. Compared to the first car that hit him, this was ten times worse. He had severe injuries, and we feared he would die this time. We were not allowed to speak with the doctors. They were so overly cautious because of HIPAA regulations and their fear of being sanctioned or penalized that they neglected to put his needs first. In their rush to avoid potential liability, they neglected the best interest of Mark and our family and treated us as enemies.
Unfortunately, he was admitted to the same hospital the first time he was hit by a car, and the psychiatrist there and the ward doctor refused to say that he had diminished capacity despite seeing Mark clearly delusional and psychotic. To obtain information from the doctors, my sister persuaded Mark to sign an ROI (Release of Information) for her. Within a few days, they had manipulated Linda's MDPOA away by asking Mark -- didn't he have another sister...they pushed him until he said yes and named her, however her phone number or address had never been known... There was something shady about it... they never even talked to her. However, they insisted that now they could not speak to us.
He sustained multiple facial lacerations, a fractured skull, and a brain bleed. Broken and dislocated shoulder that had to be manually realigned during surgery. The right elbow was shattered. A permanent rod in his leg was badly bent, and his leg was broken at the knee with a shattered tibia below. Teeth loosened and some knocked out. There was a neck injury, multiple contusions, and blood loss. How could he not be considered a danger to himself? Until he meets that legal standard, involuntary treatment, LPS conservatorship, guardianship, or placement for care can only occur if he's deemed "Gravely Disabled," and the measures necessary to meet that legal standard are equally daunting.
Having spent approximately 8 months in a post-acute care center in another county recovering from the physical injuries and being treated for the first time in three decades with antipsychotic medications, he was released. In Vacaville - to the same streets where he was hit by the car without any follow-up services or assistance. Without letting our family know... and that is where he remains today.
Families are expected to act as professionals without any training or formal education in neurology or psychiatry. Additionally, they are also the advocates, activists, who speak for the voiceless and try to protect the vulnerable. In fairness, many have a better understanding of their loved one's illness and symptoms than professionals. Families rarely have any input or even knowledge into the type of care and treatment that their loved one is receiving - if at all. Under archaic laws, they are certainly limited in their rights to make the right decisions for their loved ones.
And what is their reward for their unselfish dedication, unconditional love, and resolve to help their loved one? It is not often that they find the kind of care and treatment for their serious mental/brain illness. It's not often that they can breathe a sigh of relief knowing in their hearts that their loved one is getting all their needs met presently nor can they be assured that they will be cared for when they die. Parents or siblings... the struggle is real. The last thing they need are people who vilify them for not doing enough or leading them down the wrong path of believing that very real symptoms of a disease in their loved one are behavioral problems. Many times, the wrong advice is given because the person giving it has already resigned themselves to the myths around serious mental/brain disorders.
No one should allow themselves to be physically abused. That is not what I am saying. If a loved one who is sick causes physical harm then more drastic measures to the best of your ability need to be taken if it is feasible under the current laws where you live. But, someone who reaches out to others in frustration over what to do or how with their situation should not immediately be told to get away from that loved one. Tough love is not a treatment or a cure for serious brain disorders. That is a myth.
The most ardent serious mental illness advocates have already lost a child... a sister or a brother. These are the families who lose a loved one, regardless of how hard they tried to help them or how much they cared for them. When a loved one disappears, commits suicide, dies during arrest or a mental health crisis, or dies while incarcerated. Most of our family and friends just backed away and eventually disappeared out of our lives because they did not understand what our brother was going through and did not accept that he had no control over the symptoms. Even when you know you are going in the right direction, it can be lonely.
Both within their own communities and under the law, families need support. No matter how much pain we experience, we don't blame our loved ones who are suffering. We don't tell other families to give up. We support each other and lift each other up during times of difficulty. We do not encourage abandonment or disassociation because we believe they have behavioral issues. It is not acceptable to stop loving, ignore or discard our loved ones.
We mourn those who die too young or as a result of injustice or apathy. As well as we grieve for those who have passed on, we grieve for those who are still living. But still we fight. Still, we love.