Estranged at Christmas No More

The end of the year holidays and winter cold were some of the hardest times for me and my family the last handful of years. My mom’s housing was unstable at best. The worst of it was punctuated by her being effectively homeless for two of those years. In that time period, very short housing stints aside, she primarily lived in a car.

I’d do my best to spend Christmas Day with her, regardless of her immediate living situation. I’d drive down to Bakersfield or Fresno from the Bay Area, put her up in a hotel room and take her to Marie Callender’s for a Christmas meal, her preferred choice. The following day, I’d usually take her shopping for some clothes and undergarments, if need be. She’d regularly have minimal clothing. Clothes that she’d buy or I’d buy for her would typically disappear within months. She’d claim people would steal them from her car or from the places she was living in. I figured that she probably threw them out, as she routinely did in the past, upon believing that the clothes would become contaminated with toxins or spoiled by evil spirits.

This is what the holidays were for me. There was no real respite or joy from my time off work. It was just a sad reminder of our inability to get any care or treatment for my mom’s serious mental illness. I was planning on doing similar last year for Christmas. I was mentally preparing myself for the trip to Bakersfield the next day, when my uncle called to tell me that my mom was in the hospital with respiratory problems.

I got what information I could out of him. He was always short on information, in his usual enabling fashion. He covered for my mom and had been showing signs of deteriorating mental health himself the last couple of years. Like my mom, he denied she even had a serious mental illness.

The attending nurse told me, unsurprisingly, that my mom’s glucose was high and that my uncle was stubbornly refusing her insulin. Both my mom and uncle believe that it’s a poison and dangerous for my mom. The nurse explained that her high glucose was exacerbating her lung infection. I told the nurse that I would be there the following day, on Christmas, and, as her next of kin, I wanted them to begin administering her insulin.

When I arrived the next afternoon, I wasn’t prepared to see my mom on a respirator and essentially lifeless. My heart sank and I could feel my blood pressure and temperature immediately rise. As soon as I could, I talked to the attending nurse about her status. The nurse, a different person than the one I talked to the day before, informed me that her glucose was over 700 and that my uncle was still denying her insulin! My mom’s glucose had reached the 500s various times in the past, but I didn’t even know glucose could get into the 700s. I was in disbelief and fumed with indignation towards my uncle.

Aside from mentioning my uncle was intimidating, the nurse had no real explanation as to why they weren’t treating my mom with insulin, after I told her that I requested it on the phone the day before.  Nonetheless, I explained my mom’s psychiatric condition and history to her, and told her to start administrating insulin immediately. Despite wanting to put my uncle through a wall, I diplomatically suggested he go home and rest. Once he left, I told the hospital staff to tell hospital security that he was not allowed to see my mother.

My mother’s condition slowly improved, once they began administering insulin. Altogether, she would be in the hospital almost a week. As the initial few days hinted, though, the whole experience, from beginning to end, would be a proverbial nightmare. The hospital would ultimately discharge my mom unsafely and prematurely, against my wishes.

My mom would slip into an acute psychotic episode and begin refusing treatment. She would begin exclaiming maltreatment by the hospital staff and say she wasn’t even in a “real hospital.” At one point, she tried to get up and walk out, although she was too weak to walk and the urine catheter was still attached to her. The hospital would eventually take her out on a wheelchair to a waiting cab. This blog was initiated primarily by that experience. From January, the post about it can be found here: Me vs. the Hospital

I formally filed complaints with both the hospital and the California Department of Public Health (CDPH). Those complaints/investigations would prove unfruitful, however, just as I imagined they would. I’ve complained to the CDPH before about a different hospital. In that case, a hospital was trying to discharge my mom without considering the recommendation of her attending physician. The doctor wanted my mom to start taking insulin.

At the time, my mom was more amiable to the idea. Having cataracts, though, she was unable to administer the shots herself. I was lobbying the hospital to send my mom to an assisted living facility, where someone could administer her shots. The hospital was ready to discharge her without her insulin prescription, though. The hospital director was predictably none too happy that I had talked to the doctor at length about my mom’s care plan. Ultimately, the CDPH would find no violations in their investigation, even though it’s illegal for hospitals to discount/ignore doctor recommendations as part of their discharge plan.

This more recent investigation was an obvious joke from the start. The investigator took three months to contact me, from the time I filed my initial complaint. By then, I had already talked with one of the hospital administrators about some of the things that occurred there. I just mentioned my frustration with some of the staff’s insensitivity and the ignoring of my request over the telephone to administer my mom insulin. I didn’t want to tip her off to my complaint to the CDPH about the hospital discharge, so I didn’t mention it at all.

By the time the investigator contacted me, I was sure the hospital did what it had to do to cover its tracks. To top it off, the investigator sounded meek and unprepared for the job over the phone. She seem entirely disinterested in what I was divulging to her and didn’t once ask me to clarify or repeat anything I had said. I didn’t see how she could have been taking adequate notes.

By the time I was informed over the summer of the findings, a good six months after the incident, I wasn’t at all surprised that the investigator found no violations. Out of it all, I just received some assurance by the hospital administrator that she would work on some additional training for the staff and talk to the doctor about my concerns. Little consolation and just more proof to me that the health care system and government collude to provide inadequate and inhumane care for the people who need quality care the most.

Christmas is tomorrow and as tough as most of this past year has been living with my mom, I find some peace and consolation that she’s physically safe. In the least, I don’t have to spend any sleepless night worrying about where and how she is. It hit freezing temperatures

letterfrommom
A letter my mom wrote pleading with me to let her live with me.

for the first time this winter this past week. Letters my mom would write to me exclaiming how cold it was living in the car and asking to live with me have given way to complaints that the house is too cold at 65 degrees. “We need to watch our heating bill.”, I’ve told my mom just about every day this week. “You haven’t thrown away your jacket, have you?” I said yesterday, jokingly. “If not, put it on.” The Christmas tree definitely brings her some solace, despite the ongoing “spiritual attacks.” It’s the first tree she has had in around ten years and her bedroom is more cozy and better decorated than mine. For me, my blood pressure is the best it has been in years. For these things, we are grateful.

 

 

What To Do When Someone You Know Is in a Mental Health Crisis

In just the last month, I’ve had two friends ask me for advice on getting help/treatment for someone whom was experiencing a psychotic episode. In one of those instances, a friend’s loved one was hospitalized with potential liver failure, after consuming too much aspirin. Just trying to get basic information about what I could do to get help/treatment for my mom, when I first started trying to years ago, was one of my most frustrating and agonizing experiences.

A couple of counselors I paid to see were of little to no help whatsoever. It took phone calls to crisis hotlines and government agencies, and researching mental illness for me to start piecing together some sort of plan towards what I could do to try and get my mom effective treatment. My friends’ experiences convinced me to try and provide some information and a guideline on what to do when someone is experiencing a mental health crisis.

Disclaimer: I’m not a lawyer. My advice is mainly practical and based on vast experience with the current policies and practices of our MH system in California. Residents in others states should still find it helpful, though.

What Is Psychosis? 

A MH crisis very well may occur without psychosis being present. I’m going to focus on situations with psychosis, though, since it’s what I’m most familiar with and what is the most frightening for all involved.

From the National Institute of Mental Health: “The word psychosis is used to describe conditions that affect the mind, where there has been some loss of contact with reality. During a period of psychosis, a person’s thoughts and perceptions are disturbed and the individual may have difficulty understanding what is real and what is not.  Symptoms of psychosis include delusions (false beliefs) and hallucinations (seeing or hearing things that others do not see or hear).

A very common delusion experienced by a person having a psychotic episode is the false belief that someone or something is trying to harm and/or kill them. Hallucinations can take various forms and, when experienced together with delusions, can cause immense distress and potential danger for the person in crisis and people around them. “Can’t you hear them? They’re outside the door! They want to get me! Why don’t you believe me?!” “Those people across the street work for the FBI and are spying on me because of what I know about the government’s plans! Do you work for the FBI too?!” Obviously, a person in such a state of mind should be considered extremely volatile and agitated.

Ideally, the onset of an acute psychotic episode can be discerned before it develops. Here are some warning signs to lookout for: http://www.nami.org/earlypsychosis  For people with a known serious mental illness and history of psychotic episodes, predictors of imminent psychosis include substance abuse and ceasing medication and/or treatment.

Options for Voluntary and Involuntary Treatment and/or Commitment 

Options available to you can vary considerably, depending on the state and/or county you reside in. Recent budget cuts and austerity politics have made an already inadequate MH system pretty pitiful. Nevertheless, it’s essential to know the options available to you, as if it’s one big strategy game, because it is.

Ideally, the person in a MH crisis will be willing to seek help and treatment. This can take the form of just taking the person to a hospital emergency room. Oftentimes, there are immediate medical/physical conditions that need to be stabilized and/or treated anyways, like diabetes or high blood pressure. Or, in more extreme cases, potential organ failure. As soon as possible upon admittance, let the attending staff know, ideally a supervisor, of the person’s MH condition.

If you know the person stopped taking medication for a known mental illness, obviously getting the person to take their psychiatric medication again should be part of the hospital treatment plan. In the event that there isn’t an official diagnosis, but a mental illness is suspected, request an evaluation from the hospital psychiatrist or a mental health clinician. Hospitals want to minimize their costs, especially in this day and age, so don’t be afraid to nudge them quite a bit to do this. Again, it’s all a big strategy game. They typically want to discharge the person as soon as possible, whereas you want them to stabilize and treat the person sufficiently. In the least, they should give information about what MH services are available at the hospital or the county. Ask to speak to the hospital social worker for this information. You may, also, try to get their assistance in finding housing, in the event that the person’s current housing is insecure or non-existent. From board and cares to assisted living situations, there could be options for you and him/her.

When a person is refusing to seek treatment during a MH crisis, an involuntary commitment or hospitalization will be the only recourse. Unfortunately, due to strict civil rights laws and lack of psychiatric hospital beds, it’s exceedingly difficult to do this. Even if you’re successful in getting the person admitted,  it’s likely that the person will be released before they are effectively treated and/or stabilized. There are strategies that can and should be employed to increase the chances for commitment and treatment, however.

In the large majority of states, if not all, at the minimum, in order for someone to be involuntarily committed for a psychiatric hold, he/she needs to be a danger to oneself or other people.  What constitutes being a danger to others is pretty straight forward. A person need to be a violent, physical threat. The chances of this occurring during a psychotic episode are good, especially in the case of someone having persecutory delusions and/or hallucinations. If a person believes someone is trying to hurt and/or kill them, they will understandably try to protect themselves. My small framed mom has hit me in such a state.

Being a danger to oneself means being suicidal, but it also can mean putting oneself in a dangerous situation. For example, a person wandering into a busy street or a diabetic not managing their diabetes properly. There’s some ambiguity here. If not sure, try to ask a county mental health professional before getting authorities involved.

When someone you care about is dealing with a MH crisis, nonetheless, it’s obviously important to make sure you are safe. Stay calm. Don’t argue with the person in crisis. Do your best to assure them they are OK. Keep a safe distance if the person is agitated and angry. As soon as you can, call 911. Make sure you explain to dispatch that it is a psychiatric emergency and request that officers trained in MH crisis interventions and assessments be sent over.

Understandably, many people are reluctant to call the police, due to fear of police brutality, potential racial bias, and the lack of adequate police training in MH crisis responses. An alternative is to call a field clinician team or mobile crisis team. There are many more counties that have police SWAT teams than there are those that have field clinician or mobile crisis teams, though. Call your county’s Behavioral or Mental Health Department, or their crisis hotline, to ask if a MH response team is available.

Be Prepared for a Potential Involuntary Commitment

With someone who has a known serious mental illness and/or a history of psychotic episodes, being prepared is essential. Be sure to do the following:

  • Prepare a document (a “medical/psychiatric information sheet or report”) that includes a list of medications, contact number, relevant legal information and of course any pertinent medical/psychiatric information, such as illnesses/diseases and formal diagnosis. Once hospitalized, the attending physician or staff may not have the time or be able to communicate with you regularly. And don’t assume the doctor or hospital/treatment center is able to access any medical information about the person, via a computer or database system. The document you provide them with, regardless, can provide them with valuable information and save them substantial time. Make sure to keep the document updated with changes.
  • Know the laws and criteria in your state for involuntary commitment: http://www.treatmentadvocacycenter.org/component/content/article/183-in-a-crisis/1596-know-the-laws-in-your-state
  • Don’t be afraid to be assertive or play hardball. The laws around involuntarily hospitalizations are strict and there are various “checks and balances” once a person is admitted. People with serious mental illness are very good at telling police officers and clinicians what they want to hear when being questioned. Don’t be afraid to refute or counter what the person tells authorities. And don’t be afraid to tell the psychiatric staff that you don’t feel safe with the person returning home and that you will hold them legally liable, if anything harmful happens to the person if discharged without adequate treatment first.

The Health Insurance Portability and Accountability Act (HIPPA)

The privacy of an individual’s health information is protected by federal law. The strict interpretation of the law has led to objections by family members that it prevents them from knowing information that is relevant to the welfare of their loved one and safety of their home. There is usually more flexibility when a person’s judgment is grossly impaired, however. The doctor or staff can act in the “best interest” of the person, when their judgment is severely impaired, and give information to a family member and/or friend. I haven’t experienced any real problems getting information or talking to medical staff, when my mom has been involuntarily hospitalized. However, there are plenty of stories of family members being completely shutout, even when their loved one is cycling in and out of acute psychosis for extended periods of time. Get more information on HIPPA here: https://www.nami.org/About-NAMI/NAMI-News/Understanding-What-HIPAA-Means-for-Mental-Illness

 Other Considerations and Options

  • Short of a MH crisis, if the person is willing to receive help and treatment, then there are other options available, such as county outpatient services. The different programs can vary in their level of involvement. People with a serious mental illness should qualify for “intensive services,” programs that involve a treatment team and assertive intervention that can include monitoring and home visitations.
  • More than 46 states have passed what’s commonly called Assisted Outpatient Treatment (AOT). AOT is court ordered outpatient treatment and specifically designed for people with serious mental illness who refuse MH treatment voluntarily.
  • The lack of adequate funding for MH services and psychiatric hospitals/treatment centers has led to jails and prisons becoming the largest psychiatric treatment facilities. Familiarize yourself with what to do if someone you know ends up being arrested during a MH crisis: http://www.treatmentadvocacycenter.org/component/content/article/183-in-a-crisis/2614-understand-criminal-justice-involvement
  • Become an advocate for the person you know who suffers from a mental illness. Educate yourself as much as possible on mental illness, the various treatments and programs available, and the history and nature of our mental healthcare system (The National Alliance for Mental Illness offers education classes for family and friends.). As in the case of what I’ve had to do for my mom for just minimal support, emails and phone calls to and meetings with attorneys, journalists, politicians, along with complaints to state officials, all may need to become a regular part of your arsenal. Pushing for adequate mental healthcare reform is, also, a worthwhile and noble goal.