I am an American Curbside Caregiver ...my view from the streets.

by Linda Rippee Privatte

I have been a caregiver on the streets of my hometown to my disabled, blind brother who has a serious brain disorder with anosognosia and has been untreated and homeless for 14 years now. Lately I have been wondering what title I would be given. That is if our U.S. mental health system even acknowledged and valued the family members that go to the streets to care for their homeless untreated SMI/SBD loved ones? I have thought long and hard about the many things I try to be to my brother. Treatment will never be in his reach while the sickness in his brain tells him to say “no” to all offers of help. Lack of insight further complicates care given out on the streets.

I take him water, food and clothing, and each time he has nothing with him again. I show him love and human kindness. I remind him about family memories and make him laugh. I hold him when he is sobbing with delusions. I try to calm him when he is raging in psychosis. I am his substitute for an in home IHSS caregiver, nurse, therapist, and social worker. My responsibility goes even further as I am also expected to answer to my community about their expectations of removing my brother from their streets all the while I am out there caring for him.

Rather than reform HIPAA, LPS, and SMI/SBD laws, mental health professionals do not want to acknowledge they intentionally send the SMI/SBD to U.S. streets. You will cross paths with some good-hearted sincere citizens that will surprise you. These are the kinds of Americans and communities we cherish. Some do step up to help in many different ways. Most realize very quickly how HIPAA and our laws will shut them down too.

Become a good listener and research and consider all the advice given to you. There will not be just one answer…there will have to be many. Enlist those good Samaritans and take the smallest amount of help that they may offer. Do not look away from support and hope. My twin sister helps keep our community together, informed and interested in Mark's life - through the private Facebook group, Mark of Vacaville, and other social media activism, and I am the family member who goes out to the streets.

We have advocated for him unsuccessfully for 34 years due to laws concerning SMI/SBD in our state. He has not had mental health treatment or services in over 3 decades. There is no true mental health system in the United States for those with serious brain disorders. However, mental health professionals and outdated laws will blame and shame the families. Through HIPAA, they will blindfold, silence, and handcuff our hands, and still expect us to do the heavy lifting for them. Our family has been his mental health system. I am his lifeline. If a loved one of yours develops a serious brain disorder you will become their lifeline too. If the title has not yet been claimed… I will boldly do so now.

I am an American Curbside Caregiver, and I am not the only one!

Every family member who cares for an SMI/SBD on the streets of America should be entitled to this title. A title may be the only respect we ever get, even if we must give it to ourselves. There will be no appreciation coming from the mental health professionals and the officials in power. We are the substitute for our U.S. Mental Health System and for those with SMI/SBD that do not end up in jail in the “pretend” U.S. Mental Health System. Society may not be aware of the American Curbside Caregivers worth. My family and I do know the toll it takes on families all too well.

Let me help those of you who cannot envision by sharing some raw truths that may be uncomfortable to comprehend, let alone imagine. Be prepared to change the way you perceive the streets, the city, the county, the state, and the entire country if you become an American Curbside Caregiver like me. All the fuzziness will now be clear. You will not look at society or humanity the same ever again.

As an American Curbside Caregiver, the term "streetwise" takes on a whole new meaning. In the future, if someone you love develops a Serious Brain Disorder, you may find yourself reminded of my story and the truths I shared from my view of the streets. Due to the inability to see, my brother is 100% blind... but my eyes are open wide to the harsh realities facing those in SMI/SBD on American streets and the way our loved ones are treated. I no longer look at our nation’s streets through shaded or rose-colored glasses. Your efforts will be exhausting. Lack of empathy and unwillingness to hear you from those that can help you will plague you.

Catherine and I have lived in our hometown for 54 years, and it has always been tight-knit community and family oriented. We grew up proud of our hometown and we both remained here to raise our own children. I began my journey as an American Curbside Caregiver fourteen years ago. Even though our town was picturesque, it really could be "Any Town, USA."

I certainly do not have all the answers, but I will share with you what lessons I have learned and what to expect if you ever become an American Curbside Caregiver like me. You are going to need an enormous amount of emotional strength, determination, courage, patience, empathy, common sense, and thick skin.

You will need to be fearless of judgment from others.

You will have to protect your SMI loved one and you will be expected to protect the community simultaneously.

The care you bring to your loved one on the streets will be very public for all to see.

The care you give, the street showers, trying to hide your loved one while changing clothes, trying to calm your loved one during delusions or raging, even the love or affection you show them will always be on display.

You will face verbal judgments, laughs, honks, obscenities, and looks of disdain towards you and the situation.

You will need the ability to remain calm and take it. Yes, I said “take it,” because reacting to every objection or opinion while out on the streets usually leads to trouble at the time or later for your loved one. Stick to your mission. Always survey your safety.

I try to keep my focus on my brother and offer him care with love and respect like no one’s looking.

I try not to engage others nearby in conversation as it confuses my brother further when I am attempting to communicate with him, and he is already battling the voices in his head.

I have at times blurted out just a simple “He is my brother” and most will leave us alone.

Here is a post I wrote a few years back:

“As I was returning, I stumbled and fell over a homeless person that was asleep on the grass. I fell and I drew attention. I was scuffed up, but okay. I felt like it was my own fault I tripped, but several people in the crowd began shoving and waking the homeless person, screaming at him to go away! I turned to tell the crowd that I was okay. I was fine and wanted them to leave him alone! To my horror – I saw that it was my brother! I had not been able to find him for 14 months…the longest time I had ever lost him! I panicked at the thought that they might hurt him, and in that moment, I screamed at the crowd that he was my brother…in an effort to protect him."

"That same crowd then turned on me and, in those moments, I became just as despised and judged as my brother for a situation I had no control over. I felt the fear he felt. I felt the heaviness of the judgment of the crowd. I shared my brother’s despair.”

Be prepared for moments like these and remain strong. You may feel that your pursuit of treatment and care for your SMI loved one who is homeless is a righteous path, but there will be those who will do more than simply judge you.

They will block and restrain your efforts with HIPAA.

They will hide behind decades of outdated laws.

They will protect your loved one’s right to live and die on the streets.

The system will ignore your pleas for help and turn their heads away from your obvious distress.

In my brother’s case it makes no difference that he is also 100% blind. Officials will be dismissive of your calls and requests. If your loved one has anosognosia (lack of insight), which up to 50% do, you cannot force them to agree to any services, treatments, or emergency medical care offered. You cannot force or take your SMI loved one anywhere if they say, “No.” You will have no legal authority.

In our county Adult Protective Services has up to 10 days to respond to reports of crisis or self-neglect on the streets. Do not expect an immediate response to what you or any logical person may think is an emergency. Request a mobile crisis response team or a CIT Officer from your local police department if your city has these to offer. Not all do. Very few of those officials will become your ally. All the while, your loved one's untreated SMI will require you to care for them while handcuffed, blindfolded, and silenced under HIPAA.

If you become an American Curbside Caregiver like me, we should talk about where the streets will lead you. The best time to search is early in the morning. Always take someone with you for your safety. Keep a first aid kit, wipes, hand sanitizer, clothing, blanket, toiletries, and food and water in your car. Never forget the water. The SMI/SBD that are homeless are refused the use of most public bathrooms and do not always have access to water. It is easier to spot them where they sleep.

Get familiar with all the storefronts that seem to tolerate your loved one being there. You will sit in abandoned parking lots, storefronts, curbs, sidewalks, dirty dumpster areas and gutters with your loved one. It will be important to get to know the business owners or managers and be polite and eager to make them your ally. Let them know you are passionately trying to care for and remove your loved one from their streets and get them treatment, but our laws prevent this.

You will need to get acquainted with the location of most dumpsters in town and search behind shopping centers, especially empty shops. You are going to do a lot of walking so wear flat safe shoes. You may search parks, fields, bushes, street drains, bus stops, shelters, under overpasses, or creeks. I have taken falls and been injured while searching.

My best advice is not to go alone. When you search homeless encampments, it can be dangerous. Groups of homeless are fiercely protective of each other where outside strangers are concerned. You will search hospitals and the county jail many times over and be sure to have the coroner’s phone number handy. I have had to call too many times. This is the one thing that can be confirmed or denied by officials.

You will likely have opposition from others that you care about over your decision to be an American Curbside Caregiver. I can only say let your own conscience lead you. There will be days of embarrassment and guilt. Forgive yourself. I have had a panic attack where I could not even get out of the car when I found my brother. I froze and could not move. My heart was pounding, and my head was screaming “I can’t do this anymore!” Forgive yourself. You will take one step forward and two steps back. Some days you will fulfill your loved one’s needs, some days not so much. Many days the public may see you cry. If they do, they are seeing your loved one’s situation at the same time. Let them look. Do not underestimate the power of empathy.

www.leapinstitute.org

Become a good listener to your loved one and learn about the L.E.A.P. method of dealing with someone who is SMI. (Listen-Empathize-Agree-Partner)

You will not be able to argue the delusional thoughts away. You cannot convince your loved one otherwise, no matter how much you argue or persuade them about their delusions.

You will not be able to convince away what you know to be irrational thoughts. They will remain their own reality. So, what would the point be to try to argue about their serious mental illness that they do not believe they have? In my brother’s case I listen more than I talk. I show him empathy for what he expresses that he believes to be true, without encouraging the delusions further. He claims I have become a much better listener over the years. I have just attempted to retain his trust so that he will allow me to help him stay alive on the streets.

I am not a mental health professional, and you will not be one either. You will do your best but know that you will not be enough without treatment for your loved one. Just know that ahead of time and do your best anyway. Care for your loved one but realize that in doing so - in some counties in the U.S. you may cause your SMI loved one to not meet the criteria for gravely disabled. I decided it was more important to keep my brother alive than worry that it was going to prevent a label from being assigned to him. That label “gravely disabled” is a label in name only when even with it there are not enough residential mental health facilities to place my brother anywhere.

Document everything. Share the truth with the unknowing public that the U.S. Mental Health System is not there for the SMI/SBD population…only the worried well. I am not just an SMI/SBD advocate and activist. I am an American Curbside Caregiver, and I am not the only one! There are many of us across America’s streets. We, the family members are expected to do the impossible …take responsibility for our loved one’s no-fault brain disorder that is not treated the same as other diseases are. We are prevented from reaching our goals of treatment and housing until the disease that our loved one has causes him or her to commit a crime, or harm someone else or themselves. Then, society puts them in jail and pretends it is treating the seriously mentally ill.

Someone recently asked me, “After all that you and your sister have done to advocate for your brother, "What good has come of it?” They asked, “Tell me what has actually changed in his life?” At first, I could not speak up as I searched my mind for that answer. I got choked up at the thought that I did not know how to answer that. True enough, we tried many things that failed or went nowhere. I like to think that we and some in our community have teamed together and kept him physically safe numerous times. Our enlisting help from our community has helped us keep him fed, clothed, warm in winter and cool in summer, and good Samaritans look out for him and his safety or when he is injured.

I think my answer is, “He is still alive.”

I am often astonished that Mark continues to survive being blind in addition to the SMI/SBD. He has been shown love by us and others and has been provided with a small amount of comfort in his life that he otherwise would not have been able to have. So far, we helped him to survive his right to live and die on the streets rather than the right to receive treatment for his SMI/SBD. This may be all that we American Curbside Caregivers can expect to accomplish for our loved ones until true changes happen within our U.S. Mental Health System in America.

Linda Rippee Privatte, American Curbside Caregiver