Help or Hindrance? - The Consequences of Caring
By Catherine J Rippee-Hanson
My brother, Mark, who is blind, disabled, and has a serious mental/brain illness with anosognosia, relies heavily on the Facebook group, 'Mark of Vacaville,' to survive. We have 2,500 members, about 70% of whom live in Solano County. Due to the obstacles embedded in the current laws regarding serious mental/brain illness and the broken or nonexistent mental health care system, we can only help Mark if we come together as a community and act as his eyes - when he literally and figuratively lacks vision and insight. Providing him with a protective circle of care by monitoring and moving the pieces of the puzzle around to try to meet his needs.
I will always be with him despite the distance between us. He is my brother. I am protecting him, sending him what he needs, organizing documentation, publicizing his plight, asking, and researching information to help him - and other families like ours as well. It is for that reason that I write about his experiences so that others may better understand and hopefully join us in fighting for better laws and a better system for those of us with loved ones suffering from serious and severe mental illnesses. We should seek knowledge and the true facts about families like ours. As an advocate, I learn from other families and other advocates online and encourage them to join forces for a more powerful voice to speak for those who cannot or do not know they even need to speak for themselves.
As Mark's older sisters by six years, our concerns and quest to find Mark a legal public conservator through LPS conservatorship in California who can provide the oversight of care, services, and treatment for him after we are gone or unable to do so - became more urgent in recent years. In addition to our advancing age, neither of us is in good health. Some of Mark's nieces and his nephew, as well as my twin sister, our mother, and I used to go and help him daily. Then he became homeless after being evicted during a psychotic episode fourteen years ago. Our younger family members have grown up and now have families of their own to look after... children to protect... or are already helping other family members, like my daughter who is my caregiver... and some have moved away.
Our mother who is 81 years old is deaf and can no longer drive and is far too frail to continue to deal with Mark's psychotic symptoms and delusions. My twin sister is taking care of our mother and has her own health issues, including heart problems aggravated by stress, but she is the last family member who can go out on the streets to check on him... talk to him... listen to him and his terrifying delusions or bring him a home-cooked meal. She is the only member of Mark's immediate family who sees him personally. That is a burden that weighs heavily on her.
Throughout my life, I have struggled with many medical problems, dozens of surgeries, and physical disability. However, these past 15 years have been particularly difficult for me due to cancer and the loss of mobility that resulted in my need for a wheelchair. Unlike my twin sister, I cannot go out into the streets to look for my brother. And that burden weighs heavily on me.
The most frustrating thing in my life is not being able to see my brother but seeing his photos and videos instead. I can use a computer and write. So that's what I do. Every. Day. I am physically disabled and homebound, but I still find a way to keep an eye on my brother, know what is happening with him and direct others who are willing to help us help him. Like someone behind the curtain in Oz... I want to make sure there are enough good Samaritans in the community who don't just "know" of my brother but are willing to give a little to help him out and to help orchestrate that that empathy and compassion. When it comes to Mark, the phrase "It takes a village," takes on an entirely new meaning.
It is not always a case of families not caring. Shit happens... That is something I am very familiar with. I was humbled by life very early on and I have been humbled many times since. With my physical limitations, I can only facilitate the private Facebook group made up of family members, residents of our county, and authors and activists from across the country. I read each posted comment concerning Mark from others in our community to see what it contains. Is there any harm in the details for him? What is it that he needs urgently? Even allowing myself to feel some relief, knowing he has everything he needs if for only that moment.
Often, the only way we know he's still alive is from pictures that members of our community send us. Seeing them it reminds us of the nuances of his struggles, as well as the gut-punching insults our family faces. But also, the fact that we as family and community members are indeed trying to look after him and wanting the best for him. A select group who, rather than giving from their egos, give from their hearts. And you know what? If we continue to provide Mark with water, food, clothes, toiletries, warmers, and sleeping bags, he is not considered "gravely disabled..." The legal definition of gravely disabled.
A person is not considered "gravely disabled" if they can survive safely with the help of third-party assistance. What's that... you say? Yes, that's right.
The fact that we help Mark by providing food, water, clothing and in some cases shelter...disqualifies him for the definition needed for LPS Conservatorship in California. The law seems to have a murky grey area, so some officials claim. Alternately, he could be declared a danger to himself or others. But that has been circumvented by the illogical conclusion that even when he got struck by two vehicles on the streets of Vacaville, both times critically injured, and hundreds of other accounts of him wandering into traffic, he is not an immediate and imminent danger to himself or others.
Here is how that has worked for us in the past. Mark has been evaluated several times by a psychiatrist or social worker who has the authority to recommend LPS conservatorship while he was an inpatient for life-threatening injuries after being struck by two vehicles in a 4-month period. He was asked, "Do you want to hurt yourself or others right now?" As a result of this statement, the immediate danger to himself was ruled out. It only mattered that he did not want to commit suicide in that moment that the question was asked. So, no investigation was done as to whether he fit the legal definition of "gravely disabled" nor was he considered a danger to himself disqualifying him from being protected by LPS conservatorship. Instead, he is dumped back onto the very streets where he wandered into traffic to stumble and fall and most likely be hit again by another vehicle.
Below is a photo sent to us recently from a member of Mark of Vacaville. "Just seen Mark... he wanted a mocha iced coffee, three taquitos, and a chocolate milk... So I blessed him today. Have a good day, Mark."
Third party assistance is the aid of the family, friends, or other willing, and able to help provide for the person's food, clothing, or shelter.
In 2018, my sister Linda testified several times in Sacramento about AB1971, while I created a petition to support the bill with over 82,000 signatures and comments, using Mark's story to demonstrate how this could help. In that time, it was delivered to every member of the state's Assembly and Senate, as well as the Governor. AB1971 would have expanded the definition of "gravely disabled" in California to include "medical needs" as well as food, shelter, and clothing.
We are expected, both legally and as a society, to look the other way when it comes to him... to ignore him... to not help him. To act in a way that goes against our nature. Previously, I said I believe that some people would rather he just go away or die yet do nothing to help us get him the care, treatment, and housing he needs. I believe that if my brother were to be ignored and he was literally dying in the gutter - then he would be considered gravely disabled. It's like trying to survive in an upside-down world.
Before we try to save a drowning person, do we watch them go down repeatedly until the last breath possible? Or they just don't come up again? Is it wrong to assume someone would have already jumped in? I don't think our expectations are too high. As society has become desensitized, their expectations are too low for how we treat the most vulnerable among us.
We are just trying to keep him alive. We are unable to contain him physically, and the law is against us. Through constant help from us and the local community, we are preventing him from meeting the legal criteria in California for being gravely disabled. It is only at the point of near-death that the law will protect him from himself. We have a group of loosely connected people who have come together in support of keeping Mark alive with our group.
Still, when determining whether he is "gravely disabled" within the legal definition that we have today, under the law pertaining to LPS conservatorship, the criteria for being declared “gravely disabled” is negated by our family and the community. So, is wanting to help him survive - a help or a hindrance? Must his last gasp of breath be what determines if we protect him or save him?