Caregiver Stress and Burnout. Tips for Regaining Your Energy, Optimism, and Hope

September 18, 2019 | Melinda Smith, M.A.

The demands of care giving can be overwhelming, especially if you feel that you’re in over your head or have little control over the situation. If the stress of care-giving is left unchecked, it can take a toll on your health,
relationships, and state of mind eventually leading to caregiver burnout. And when you’re burned out, it’s tough to do anything, let alone look after someone else. That’s why taking
care of yourself isn’t a luxury, it’s a necessity. There are plenty of things you can do to rein
in the stress of care-giving and regain a sense of balance, joy, and hope in your life.

What is caregiver burnout?

Caregiver burnout is a state of emotional, mental, and physical exhaustion caused by the
prolonged and overwhelming stress of care-giving. While caring for a loved one can be very rewarding, it also involves many stressors. And since care-giving is often a long-term challenge, the stress it generates can be particularly damaging. You may face years or even decades of care-giving responsibilities. It can be particularly disheartening when there’s no hope that your family member will get better or if, despite your best efforts, their condition is gradually deteriorating.

If you don’t get the physical and emotional support you need, the stress of care-giving can leave you vulnerable to a wide range of problems, including depression, anxiety, and eventually burnout. And when you get to that point, both you and the person you’re caring for suffer. That’s why managing the stress levels in your life is just as important as making sure your family member gets to their doctor’s appointment or takes their medication on
time. No matter how stressful your care-giving responsibilities or how bleak your situation seems, there are plenty of things you can do to ease your stress levels, avoid caregiver burnout, and start to feel positive and hopeful again.

Signs and symptoms of caregiver stress and burnout

By learning to recognize the signs of caregiver stress, you can take steps to deal with the problem and prevent burnout. Or if you recognize that you’ve already hit your breaking point, you can take action right away. Once you burn out, care-giving is no longer a healthy option for either you or the person you’re caring for, so it’s important to watch for the warning signs.

Common signs and symptoms of caregiver stress

  • Anxiety, depression, irritability
  • Feeling tired and run down
  • Difficulty sleeping
  • Overreacting to minor nuisances
  • New or worsening health problems
  • Trouble concentrating
  • Feeling increasingly resentful
  • Drinking, smoking, or eating more
  • Neglecting responsibilities
  • Cutting back on leisure activities

Common signs and symptoms of caregiver burnout

  • You have much less energy than you once had
  • It seems like you catch every cold or bout of flu that’s going around
  • You’re constantly exhausted, even after sleeping or taking a break
  • You neglect your own needs, either because you’re too busy or you don’t care anymore
  • Your life revolves around care-giving, but it gives you little satisfaction
  • You have trouble relaxing, even when help is available
  • You’re increasingly impatient and irritable with the person you’re caring for
  • You feel helpless and hopeless

While caring for a loved one will never be stress-free, the following tips can help you to lighten the load, avoid the symptoms of caregiver burnout, and find more balance in your life.

Avoid caregiver burnout by feeling empowered

Feeling powerless is the number one contributor to burnout and depression. And it’s an easy trap to fall into as a caregiver, especially if you feel stuck in a role you didn’t expect or can spend a tremendous amount of energy dwelling on things you can’t change and for helpless to change things for the better. But no matter the situation, you aren’t powerless. This is especially true when it comes to your state of mind. You can’t always get the extra
time, money, or physical assistance you’d like, but you can always get more happiness and hope.

Practice acceptance. When faced with the unfairness of a loved one’s illness or the burden of care-giving, there’s often a need to make sense of the situation and ask “Why?” But you which there are no clear answers. And at the end of the day, you won’t feel any better. Try to avoid the emotional trap of feeling sorry for yourself or searching for someone to blame.

Embrace your caregiving choice. Acknowledge that, despite any resentments or burdens you feel, you have made a conscious choice to provide care. Focus on the positive reasons behind that choice. Perhaps you provide care to repay your parent for the care they gave you growing up. Or maybe it’s because of your values or the example you want to set for your children. These deep, meaningful motivations can help sustain you through difficult
times.

Look for the silver lining. Think about the ways care giving has made you stronger or how it’s brought you closer to the person you’re taking care of or to other family members.

Don’t let care-giving take over your life. Since it’s easier to accept a difficult situation when there are other areas of your life that are rewarding, it’s important not to let caregiving take over your whole existence. Invest in things that give you meaning and purpose whether it’s your family, church, a favorite hobby, or your career.

Focus on the things you can control. You can’t wish for more hours in the day or force your brother to help out more. Rather than stressing out over things you can’t control, focus on how you choose to react to problems.

Celebrate the small victories. If you start to feel discouraged, remind yourself that all your efforts matter. You don’t have to cure your loved one’s illness to make a difference. Don’t underestimate the importance of making your loved one feel more safe, comfortable, and loved!

Get the appreciation you need

Feeling appreciated can go a long way toward not only accepting a stressful situation, but enjoying life more. Studies show that caregivers who feel appreciated experience greater physical and emotional health. Care-giving actually makes them happier and healthier, despite its demands. But what can you do if the person you’re caring for is no longer able to feel or show their appreciation for your time and efforts?

Imagine how your loved one would respond if they were healthy. If they weren’t preoccupied with illness or pain (or disabled by dementia), how would your loved one feel about the love and care you’re giving? Remind yourself that the person would express gratitude if they were able.

Applaud your own efforts. If you’re not getting external validation, find ways to acknowledge and reward yourself. Remind yourself of how much you are helping. If you need something more concrete, try making a list of all the ways your caregiving is making a difference. Refer back to it when you start to feel low.

Talk to a supportive family member or friend. Positive reinforcement doesn’t have to come from the person you’re caring for. When you’re feeling unappreciated, turn to friends and family who will listen to you and acknowledge your efforts.

Ask for care-giving help

Taking on all of the responsibilities of care-giving without regular breaks or assistance is a surefire recipe for caregiver burnout. Don’t try to do it all alone.

Look into respite care. Enlist friends and family who live near you to run errands, bring a hot meal, or watch the patient so you can take a well-deserved break. Volunteers or paid help can also provide in-home services, either occasionally or on a regular basis. Or you can
explore out-of-home respite programs such as adult day care centers and nursing homes.

Speak up. Don’t expect friends and family members to automatically know what you need or how you’re feeling. Be up front about what’s going on with you and the person that you’re caring for. If you have concerns or thoughts about how to improve the situation, express
them, even if you’re unsure of how they’ll be received. Start a dialogue.

Spread the responsibility. Try to get as many family members involved as possible. Even someone who lives far away can help. You may also want to divide up care-giving tasks. One person can take care of medical responsibilities, another with finances and bills, and another with groceries and errands, for example.

Set up a regular check-in. Ask a family member, friend, or volunteer from your church or senior center to call you at a regular time (daily, weekly, or as often as you think you need it). This person can help you spread status updates and coordinate with other family members.

Say “yes” when someone offers assistance. Don’t be shy about accepting help. Let people feel good about supporting you. It’s smart to have a list ready of small tasks that others could easily take care of, such as picking up groceries or driving your loved one to an appointment.

Be willing to relinquish some control. Delegating is one thing, trying to control every aspect of care is another. People will be less likely to help if you micromanage, give orders, or insist on doing things your way.

Give yourself a break

As a busy caregiver, leisure time may seem like an impossible luxury. But you owe it to yourself—as well as to the person you’re caring for—to carve it into your schedule. Give yourself permission to rest and to do things that you enjoy on a daily basis. You will be a better caregiver for it.

There’s a difference between being busy and being productive. If you’re not regularly taking time-off to de-stress and recharge your batteries, you’ll end up accomplishing less in the long run. After a break, you should feel more energetic and focused, so you’ll quickly make up for your relaxation time.

Maintain your personal relationships. Don’t let your friendships get lost in the shuffle of care-giving. These relationships will help sustain you and keep you positive. If it’s difficult to leave the house, invite friends over to visit with you over coffee, tea, or dinner.

Share your feelings. The simple act of expressing what you’re going through can be very cathartic. Sharing your feelings with family or friends won’t make you a burden to others. In fact, most people will be flattered that you trust them enough to confide in them, and it will only strengthen your bond.

Prioritize activities that bring you enjoyment. Make regular time for hobbies that bring you happiness, whether it’s reading, working in the garden, tinkering in your workshop, knitting, playing with the dogs, or watching the game.

Find ways to pamper yourself. Small luxuries can go a long way towards relieving stress and boosting your spirits. Light candles and take a long bath. Ask your spouse for a back rub. Get a manicure. Buy fresh flowers for the house. Whatever makes you feel special.

Make yourself laugh. Laughter is an excellent antidote to stress—and a little goes a long way. Read a funny book, watch a comedy, or call a friend who makes you laugh. And whenever you can, try to find the humor in everyday situations.

Get out of the house. Seek out friends, family, and respite care providers to step in with care-giving so you can have some time away from the home.

Take care of your own health

Think of your body like a car. With the right fuel and proper maintenance, it will run reliably and well. Neglect its upkeep and it will start to give you trouble. Don’t add to the stress of your care-giving situation with avoidable health woes.

Keep on top of your doctor visits. It’s easy to forget about your own health when you’re busy with a loved one’s care. Don’t skip check-ups or medical appointments. You need to be healthy in order to take good care of your family member.

Exercise. When you’re stressed and tired, the last thing you feel like doing is exercising. But you’ll feel better afterwards. Exercise is a powerful stress reliever and mood enhancer. Aim for a minimum of 30 minutes on most days—break it up into three 10-minute sessions if
that’s easier. When you exercise regularly, you’ll also find it boosts your energy level and helps you fight fatigue.

Practice a relaxation technique. A daily relaxation or meditation practice can help you relieve stress and boost feelings of joy and well-being. Try yoga, deep breathing, progressive muscle relaxation, or mindfulness meditation. Even a few minutes in the middle of an overwhelming day can help you feel more centered.

Eat well. Nourish your body with fresh fruit, vegetables, lean protein, and healthy fats such as fish, nuts, and olive oil. Unlike sugar and caffeine—which provide a quick pick-me-up and an even quicker crash—these foods will fuel you with steady energy.

Don’t skimp on sleep. Cutting back on time in bed is counterproductive—at least if your goal is to accomplish more. Most people need more sleep than they think (8 hours is the norm). When you get less, your mood, energy, productivity, and ability to handle stress will suffer.

Your generous Donations allow IAES to continue our important work and saves lives!

Become an Advocate by sharing your story. It may result in an accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to: IAES@autoimmune-encephalitis.org  

Special Thanks to HelpGuide.org for permission to reprint this article.

 

 

IAES Turns 3. Meet Our New Board of Directors

IAES Turns 3. Meet Our New Board of Directors

September 5th, 2019

The IAES Board of Directors is a group of committed volunteers. No board member receives compensation. Therefore, we are especially grateful to have the expertise and talents of these dedicated professionals. Our annual election results bring us some familiar faces, who are now in new positions, and some new faces. All of whom are fully dedicated to serving the worldwide autoimmune encephalitis community and advancing our mission.

Tabitha Andrew Orth, President

Dr. Daria Muir, Secretary

Gene Desotell, Vice President

Oksana Sweeney, C.P.A, Treasurer

 

Dear AE Family,

Who would have imagined in 2016 that IAES would change the direction of the AE community?  Yet that is the praise we are hearing from Doctors, patients, caregivers and families from all over the world.

As the community’s only Family/Patient centered non-profit, IAES offers services that were never available before.  IAES provides guidance from when a person first becomes ill all the way through to their recovery/rehabilitation. You find a family you never knew you had with IAES. We take your hand and become your constant BFF resource no matter what challenge you find yourself faced with.

Our free pro-active guide, the ‘First Aid Tool Kit’, has become the ‘go to’ guide in the AE community.

IAES provides information that overturns treatment denials, medical over billing, educational support in understanding treatments, the disease process and what to expect. Guidance to improve relationships with your medical team, resources that affect every avenue of this journey.

Doctors around the world utilize our website to accurately diagnose and treat their patients. A team of doctors in Russia contacted us to thank us for the work we do and reported that the information they were able to access on our website saved their patients’ lives.

Our collaboration with top researchers in Autoimmune Encephalitis continues to widen. The increase in awareness in the medical community has resulted in a much higher rate of patients getting diagnosed faster.  The daily gratitude we receive for our services just might give you a ‘swelled head’, (pun intended), but our work has only just begun!

Celebrate our birthday by becoming an IAES Angel.

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you an “I am an IAES Angel” badge and profile frame to place on your Facebook page or Website.  As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

Click image. (note: To become an IAES Angel, select “I would like to designate this donation to a specific fund”, and then select: “I would like to become an IAES Angel”.

 

With Gratitude,

Tabitha Andrews Orth, President,

International Autoimmune Encephalitis Society

E-mail: Tabitha.Orth@autoimmune-encephalitis.org

 

 

 

Your generous Donations allow IAES to continue our important work and saves lives!

Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children’s Hospital

August-7-2019 | Sheila Sims

Hello all!

My daughter and I attended the July 27th ‘Day of Strength’ event at Texas Children’s Hospital.  I wanted to share our experience as I hope others will get the opportunity to attend events like this one in the future as well. We were informed about this convention by my daughter’s Neuroimmunologist (Dr. Rohini) as we had been in her office for my daughter’s first visit with her. She informed us that there would be information from experts attending and speaking on Autoimmune Encephalitis. I was intrigued so I immediately went online and booked our tickets.

A little back story about our personal experience with Anti-Nmda Receptor Encephalitis. It all began on February 7, 2019. My daughter had been feeling “not herself” for a couple of weeks. She informed me she could not think straight, she was confused, eye sight was not right (seeing double) and she was exhausted. I made her an appointment with her primary and she was diagnosed with a UTI.

I figured OK, maybe this is a bad one and after a round of antibiotics, she will feel much better. That was not the case. After a couple of trips to the ER after her appointment, things just started to get worse. I made her a second appointment with her primary, as I knew something was not right. The day of her second appointment is when we would witness the scariest times of our lives. As she was getting ready for her appointment, she started making no sense with her words and had no clue about what we were doing.  She didn’t even know where she was.  Then out of nowhere, she collapsed and started seizing.

This was all so completely out of the ordinary for her as she had been healthy her entire life. She was rushed to the hospital by ambulance as she seized again en-route by ambulance to the hospital. When we arrived, they immediately took her for scans and performed a lumbar puncture. They knew after the lumbar puncture, that she was in fact ill, just had no diagnosis just yet. It would be three weeks in the hospital before the diagnosis of Anti-NMDA autoimmune encephalitis was confirmed. She experienced psychosis, hallucinations, clonus, tonic clonic seizures, periods of comatose, and several other symptoms.

After two months hospitalization, needless to say, this is when I decided I will not stop until we have answers. I would not stop looking for information that could be beneficial to my daughter and I knew there were people out there going through this as well. Thankfully, my sister (Dianna Sims) was helping try to find information when she stumbled upon International Autoimmune Encephalitis Society. I will just say, it was God sent! OK, OK, enough about us and back to the day of strength.

We went to this convention, it was our first time attending something like this. My main goal when going was to get better informed by experts and individuals that have walked this walk. We got there a tad early and I do not regret it. When we got there, we sat at a table alone feeling a little awkward and maybe a little out of place. Things soon lightened up as we started to meet more people. The first two people we met where a mother and her 18-year-old daughter from New York. They were just plain out beautiful people. The daughter, we discovered was also fighting anti-NMDAr AE.  My daughter instantly felt that she was not alone in this fight and that there were, in fact, people that could relate to her. That was a hug to my heart. The people we met and all those who attended, caregivers, parents and patients were all struggling in the same way. All of us were fighting for the same cause, walking the same journey and we felt for the first time that we not alone. This was the first time I experienced that we do not have to fight alone. Being in the company of others who we could talk with who related and understood our situation because it was a shared experience.

Nesrin Shaheen

When the convention started, Dr. Muscal spoke first. He spoke about the history of encephalitis and all the new findings, treatments that are available and the hope of a cure one day. He was intriguing and brilliant. He had information that I was glad to receive as I had not seen some of it before. The next presenter was Nesrin Shaheen. She spoke of her daughters’ journey and how they fought for many years before a correct diagnosis was made. She also spoke of some ancient history around encephalitis and had some awesome slides of possible encephalitis in that ERA. If a mother ever wins “Mother of the Year Award”, she would be that mother! She fought, she involved herself and, in the end, her daughter is succeeding well! She is my new role model (next to God, of course! Lol)

Dr. Saxena

Next, Dr. Saxena (Psychiatrist) spoke. She discussed the psychiatric symptoms of Encephalitis. She went over a list of medications to help as well. Not many Psychiatrists are well informed about symptoms and correct psychiatric supportive medications for autoimmune encephalitis but she was! She made perfect sense. The last session we were able to stay for was the “self-care” session. In this session, patients as well as care givers were given a breathing exercise to practice. They also went over a check list that was provided to everyone in the room of different activities that they may be willing to do as to take a minute or two of the day to self-care. Though the patient is the focus, caregivers must also maintain a level of self-care. I think that this was very important as many of us have lost ourselves as caregivers and have forgotten ourselves and what some of our basic needs may be.  This was a real eye opener.

I have to say, I was a little skeptical and nervous going into this whole convention thing but, it really opened my eyes to all the treatments, the people going through the same thing and the possibilities that patients actually have! This is something I absolutely do not regret and look forward to attending many more as we are able.

Your generous Donations allow IAES to continue our important work and saves lives!

When the judge has read the book…

When the judge has read the book…

May 22, 2019 | Julie Ann Fetch

Finally, some good news to share with everyone.

I just got a favorable ruling from Social Security Disability that I meet their criteria due to my having anti-NMDAr Encephalitis and other autoimmune conditions.I initially applied in 2015 and after a long battle with appeals and 2 hearings, I won!

Here are my take home messages:

1.     Apply for yourself, have someone do it for you, or apply for your loved one as soon as there is a diagnosis.

2.     Report all medical conditions, not just autoimmune encephalitis. Surprisingly, my case was approved more for my Crohn’s Disease and other autoimmune conditions than the anti-NMDAr, but all of these conditions were complicating each other.

3.     Don’t give up if you are at first denied. Appeal. Hire an attorney that only takes a small percentage and only if you win. I think mine only made $6000 from my case.

4.     Make sure your doctors write in the record the things you tell them about. Like fatigue, confusion, anxiety, depression, slurred speech, vision issues, etc. and give them exact examples of how it affects your everyday life. Better yet, write your list of symptoms out and ask/make them file it in your medical record. Or, track a “typical day” for a week or longer and show it your doctors. 

5.     Have others who live with you or observe you, tell the doctors what they see with their own eyes or ask them to write it down so the doctor can put it in your record.

6.     The biggest thing I learned in this process, is that they don’t award disability based on just a diagnosis. It has to be in your medical record how it is affecting you day to day to the point that you “couldn’t sort pencils” as my attorney always said. As we all know, before encephalitis is properly diagnosed and appropriately treated, “sorting pencils” is probably not even possible. (It still may not even be possible during recovery either for that matter!)

Keep up the good fight.

Oh, and my judge read the book “Brain in Fire”, so awareness is spreading everywhere!


 International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.


You generous Donations allow IAES to continue our important work and saves lives!

Learning Supports for Children and Young People with AE

Learning Supports for Children and Young People with AE

May 8, 2019  |  Alison Westerkamm and Missy Simpson

After a diagnosis of Autoimmune Encephalitis many children and young people will need specialized learning supports to enable them to succeed at school. This blog post explains what Alison Westerkamm discovered when navigating her way through the learning support maze for her daughter in the United States.

Thanks to the guidance and support IAES gave us during my daughter’s Individualized Education Program (IEP) process, our second meeting with the school was much more productive and they incorporated all of our requests!

We were finally able to get a bus home at 1:30pm that drops off at our house. During the first meeting, they couldn’t help us at all with transportation and we had to fight just to get noise canceling headphones for testing. Not signing the initial proposed IEP, was powerful in getting our concerns addressed. Schools often say they can’t when, in fact, legally they can and are REQUIRED by law.

Here are some other tips:

  1. Request a special education evaluation, as soon as possible and submit your request in writing. Schools have 50 school calendar days to complete it. The clock starts when they receive your written request. Once the evaluation is completed, they will schedule a case conference meeting to determine eligibility for services. The information you provide during the evaluation is equally as important as individual test scores. Don’t forget that evaluation results support eligibility for services and drive IEP goals. Also, request a copy of the school psychologist and any other evaluation reports, prior to the case conference meeting.

  2. Get letters from your child’s doctors supporting need for services. Provide information and articles about AE – but most importantly educate about AE and how it personally impacts your child’s daily functioning.

  3. AE should be covered under the designation of ‘Other Health Impaired.’ Schools may do a 504 Accommodation Plan first, but file under the Individuals with Disabilities Education Act (IDEA). The required IEP under IDEA carries more weight and has to be followed. Our daughter started 9th grade at her new high school in January, because she was hospitalized for so long during the fall. She started on a modified schedule with a 504 Accommodation Plan. We couldn’t request testing until she was a registered student at the school and started her first day.

  4. Familiarize yourself with special education laws and your parent rights before the case conference meeting. Consult with a local advocacy group.

  5. Know what kind of accommodations you want for your child, before going into the case conference meeting (e.g. audio/digital texts, magnetic locker key, teacher notes, chunking, testing free from distractions).

  6. Take notes or record the meeting. Everything you say does not always end up in their transcription of the meeting. It’s good when they know you are paying attention to everything and documenting it. I brought my laptop into the second meeting.

  7. Don’t feel pressured to sign the initial proposed IEP if it does not adequately meet your child’s needs. Tell them you need time to review it. Write a letter of parent exception to the proposed IEP. In it, state what you want for your child and why – support with articles/links. Make sure they respond to each of your concerns, within a 5-10 day time frame and include your letter in the second IEP meeting documentation. Don’t sign the revision IEP, until you see that it reflects the changes you want.

  8. If the meeting gets tense, it can feel like the school vs. parents. Definitely advocate for your child, but do so in a way that is respectful and courteous. Remind them that we all want the same thing, for my child to have the necessary tools to be able to learn and be as successful, as students who do not have a medical condition or disability. It’s important to say that even though my child may not appear sick, these are the symptoms and deficits he/she struggles with on a daily basis and what it may look like in the classroom. Liken it to the struggles of students with TBI and how the recovery process is similar.

I hope my experience can be helpful to someone else in our AE community.

When Alison initially posted the above information in the IAES Face Book educational group for patients with a diagnosis and their loved ones, another member, Missy Simpson added the following.

Really good information. Thanks for sharing.  A couple of clarifications worth sharing

  1. AE itself is not a qualifier for special education, even under “other health impaired”. The student must be functioning below grade level as a result of the AE to be eligible for special education. For example, a child with severe fatigue issues and seizures may still be working on grade level, but may very well need some assistance to maintain those levels.

  2. Many of our “AE kids” are more likely be eligible for a 504 plan, with accommodations needing to be put in place to meet their needs. Schools are still required to follow these plans! And if one accommodation doesn’t work – try something else!

  3. Be prepared to present accommodations that you know work for your child! There is a good chance the school may not have thought of some of the strategies that work for your child. Always think outside of the box when it comes to accommodations. As a former Assistive Technology Facilitator for a school system, I speak from personal experience.

  4. Recording the meeting is a great strategy, so that you can go back and listen later, rather than getting caught up in taking notes, and missing important dialog – but, you have to let the school know your intention is to record the meeting.

  5. Centers for Independent Living (CILs) exist in all 50 states, and include advocacy as one of their services, free of charge. Many CILs will provide advocacy services for parents of children with special needs. Find your local CIL and ask them!

As an advocate, I was once asked by my former co-workers, “Why are you on that side of the table?” that was exactly why! There should not have to be a us/them at the table. We should all be there for the same purpose. Sometimes you just need to drive that point home a little harder than others.

Websites that may help:

What is an IEP?

National Council of Independent Living 

A Guide to the Individualized Education Program U.S. Department of Education

  

International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

You generous Donations allow IAES to continue our import work and saves lives!

The Dangers of Psychiatric Involuntary Commitment with Autoimmune Encephalitis Onset

The Dangers of Psychiatric Involuntary Commitment with Autoimmune Encephalitis Onset

April 10, 2019  Ι  Gene Desotell, BA Administration of Justice and Sociology

The disease Autoimmune Encephalitis causes many neurological and psychiatric symptoms. To name a few: psychosis, depression, anxiety, balance problems, insomnia, visual hallucinations, aggression, agitation, delusions, memory loss, behavior changes (frequently bizarre), disorientation, confusion, problems talking, seizures, involuntary movements, distorted vision, weakness or numbness of part of the body, many of these symptoms are present for months and intermittently fluctuate.  

Since many of these symptoms are also present with bipolar disorder or schizophrenia, and Autoimmune Encephalitis is a newly identified neurological set of disorders, many first-time medical responders such as emergency room personnel, psychiatrists and neurologists have never heard of these disorders or seen a case.  Given that psychiatric symptoms are usually the first and most prominent to present themselves in autoimmune encephalitis prior to more obvious neurological symptoms that are not seen in psychiatric disorders, patients with first time psychosis or other psychiatric symptoms are frequently misdiagnosed as a psychiatric case.  The patient is then detoured away from neurological evaluations and suspicions of central nervous system involvement and incorrectly admitted as a psychiatric patient.  

This pitfall, due to lack of medical and public awareness of these disorders, puts the autoimmune encephalitis patient in danger of delayed diagnosis or worse: never being correctly diagnosed.  Autoimmune encephalitis is a highly treatable and reversible disease.  Timely diagnosis brings best outcomes and delays can result in permanent brain damage or a life threatening medical crisis with tragic consequences.   

Involuntary commitment or civil commitment

Emergency involuntary institutionalization, (also known informally as sectioning or being sectioned in some jurisdictions, such as the United Kingdom), is a legal process through which an individual who is deemed by a qualified agent initiated by judges, law enforcement officials, physicians, or mental health professionals to have symptoms of severe mental disorder is court-ordered into treatment in a psychiatric facility or ward as an ‘inmate patient’. Involuntary examination can occur when there is evidence that the person:

1.  Possibly has a mental illness

2.  Is a harm to self, harm to others, or self-neglectful

Examinations may last up to 72 hours after a person is deemed medically stable.  Criteria for involuntary civil commitment are established by laws, which vary between nations. Commitment proceedings often follow a period of emergency hospitalization, during which an individual with acute psychiatric symptoms is confined for a relatively short duration (e.g. 72 hours) in a treatment facility for evaluation and stabilization by mental health professionals—who may then determine whether further civil commitment is appropriate or necessary. If civil commitment proceedings follow, then the evaluation is presented in a formal court hearing where testimony and other evidence may also be submitted. The subject of the hearing is typically entitled to legal counsel and may challenge a commitment order through habeas corpus rules.

Without medical treatment that addresses the cause of the patient’s symptoms, immune suppression for autoimmune encephalitis, the ‘inmate patient’ can not be stabilized for 72 hours and legal commitment court hearings commence. This tragic situation is further complicated by the fact that autoimmune encephalitis patients are anti-psychotic intolerant. Since many of the common medications given to treat bipolar disorder or schizophrenic patients are strong dopamine antagonists, the AE patient particularly anti-NMDAr encephalitis patients being neuroleptic intolerant, show: catatonia, rigidity, autonomic instability and altered level of consciousness after being administered these medications.  This outcome is an added ‘nail in the coffin’ to the now more certain possibility that the autoimmune encephalitis patient be sentenced to legal commitment. 

It is important to note that once a patient is successfully diagnosed with autoimmune encephalitis, the danger of involuntary commitment to a psychiatric facility has not passed. As my wife’s caregiver, I have learned to be prepared in the event of her suddenly relapsing.  Prednisone historically successfully brings her back to base line with all psychiatric symptoms resolved within a very short period.

The need for an emergency prescription of 60 mg of prednisone became evident to me one memorable weekend.  My wife’s doctor was not in one day and I called and got a resident on the phone. I explained that she was in relapse and out of prednisone. She required an urgent refill to pull her out of her state and resolve her symptoms. The resident asked me to list her apparent presenting symptoms. I said, “Hallucinations, severe depression, balance issues and stupor.” 

The resident responded, “She takes prednisone for those symptoms?”

“Yes”, I reported.   “Prednisone has resolved all of her symptoms during several relapses.”  I realized he knew nothing about Autoimmune Encephalitis and began to feel the helplessness of being faced with a medical professional unfamiliar with her diagnosis so I said, “Look, call her doctor. He can explain to you why prednisolone works for her diagnosis. Right now, we need to get going on a refill!”  He said he would contact her regular doctor and call me right back. Five minutes later he called back to tell me the prescription was called in and ready for pick up. Lesson learned: always be ready for the relapse. The alternative of going to an emergency room and having her misdirected to psych was not an option I wanted to face in the mist of her medical crisis.

As a police officer with an associate degree in Police Science and Bachelors in both Administration of Justice and Sociology, I have had a lot of experience with administering civil commitments, incarceration on the psych ward.  To police officer’s it is known by the terminology ‘to Baker Act a civilian’.  While working in the department my routinely assigned patrol area was in the Ghetto between Milwaukee and Chicago. The Ghetto is the prime location for a police officer to acquire the most experience in any law enforcement department. In my work, it was common place to witness people with mental illness being shunned, talked down to, mistreated by family members or by members of the community who did not understand mental illness.

I still remember the 70-year-old woman who lived in constant fear because she was convinced three men who lived in her home would launch their attack some night soon and successfully slit her throat. I clearly recall a woman who was a survivor or Nazi Germany, asking me and my partner if we thought we could made it past the Germans outside who were gunning people down as they came and went from her home. She had survived war only to be forever psychologically traumatized by mentally reliving the terrors she had witnessed. This was no way for a person to live their life when help was available. Yet, involuntary commitment was the only way I could guarantee the help they needed was delivered in order for them to live their life to the fullest once more.

I did more civil commitments then any law enforcement officer in my 200-manned department. I acquired expert knowledge in civil commitment statutes in order to ensure that citizens received the best opportunity for a safe and improved quality of life by accessing the help and support they needed. Provisions under the statute included victims of drug and alcohol addictions. Some alcoholics or drug addicts are such a danger to themselves and others that they will literally consume lethal substance amounts or have such behavior change they are a danger to society. These citizens are subject to commitment under the statute.

My wife avoided commitment because I knew what to do to reverse the relapse, in her case it was 60 mg prednisone daily for 6 days. Unfortunately, many people with AE do not know that this treatment is documented in research covering treatment protocol for chronic maintenance addressing relapse. Many doctors have never heard of Autoimmune Encephalitis so they are equally unaware. In reading autopsy studies of AE patients, many had died because no one knew to give steroids in a relapse. Suicide, due to autoimmune depression, is also a common threat to the patient in a state of uncontrolled AE.  Insufficient awareness of autoimmune encephalitis continues to be responsible for legal commitments from misdiagnosis resulting in loss of life when an inexpensive treatment such as steroids can completely resolve the psychiatric presentation seen at onset or in relapse.

Placing a Patient on a Psych Hold can Lead to Long Term Legal Commitment

 

The usual course of action is a patient is placed on a 72-hour psych hold by a Judge based on a petition to the court made by a police officer or Doctor. Once this occurs, it is imperative that a family member or caregiver immediately hire an attorney versed in this area of law to represent the patient’s interests. The AE patient is now in the life-threatening situation of not receiving the medical treatment necessary and could find themselves legally committed jeopardizing their life and if they survive, their quality of life.  It is of the utmost importance that the danger this represents is understood by the patient’s family and that no delay for proper legal counsel occurs. If financial circumstances restrict you, going into credit card debit or selling what you can to acquire the legal funds should be considered to save your loved one’s life.

Once the Judge has approved the petition for a 72-hour psych hold, a court date is set for a hearing. An involuntary legal commitment can only be made by a Judge’s court order. Only a Judge can reverse the Judge’s order. The police or Doctor, who originally petitioned the court, can only petition the court to reverse the Judge’s order. The Judge who placed you on the psych hold is the only person who can give permission to arrange for you to be transferred to a medical hospital for a neurological work up. Therefore, if you do have a diagnosis and have been treated by an expert Neuro-immunologist in the past, they are not able to release you from a psych hold or prevent a court date from occurring as they did not place you on that hold and are not working at the facility where you are being held and are not overseeing your care. You are at the mercy of an attorney, their due diligence and research into your circumstances and the Judge in charge of hearing your case.

At this point, for the AE patient, expert testimony from a neurologist in the field of autoimmune neurology could prove to be invaluable.  However, this usually doesn’t happen. The Psychiatric medical community is used to looking at these cases not as a neurological condition but rather a psychiatric illness. Psychiatrists are convinced their diagnosis of bipolar disorder or schizophrenia is accurate and have a career in seeing the patient improve and stabilize with anti-psychotic dopamine antagonist medications. They are confident that their treatment will lead to their patient being stabilized. However, as previously discussed these treatments have a devastating effect on the AE patient. Once legally committed, often for a period of 6-month, that time usually needs to elapse before the case is heard again in court.  It is very hard to get around or get out of a commitment.   You can only be released by order of the Judge.   

So, what can one do when psychiatric protocol is followed and a neurological protocol is ignored? The only option is to convince the judge that the patient is suffering from a neurological disorder and requires a full neurological evaluation to determine their diagnosis. In order to achieve this, an expert in the field of autoimmune encephalitis needs to be able to evaluate the patient to provide the medical evidence of the diagnosis. The Neuro-immunologist then needs to explain in court what medical treatments are needed. Warn against what subjecting the patient to psychiatric medications can do in worsening the patient’s condition and the ramifications of allowing the disease to progress unchecked. This needs to be accomplished to the Judge’s satisfaction while the Psychiatrist will be presenting their arguments for how they arrived at their psychiatric diagnosis and treatment plan.

As a patient advocate in the autoimmune encephalitis community, I have witnessed many preventable worse case scenarios.  I have witnessed cases where family felt making the financial sacrifice of hiring an experienced attorney specializing in civil commitment law was unnecessary and felt confident a court appointed attorney would suffice.  I have witnessed cases where a caregiver or family member felt they could speak in court for their loved one instead of a medical professional.  I have witnessed families feeling confident that they could advocate themselves out of the possibility of legal commitment either because they felt they knew their loved one so well or their medical condition or simply loved them so much that they truly felt nothing horrific would befall them.  

Unfortunately, each time I have watched a family decide against expert legal counsel from the very first of hearing their family member has been placed on a psychiatric hold, I have had to watch the horrors unfold and a legal commitment occur. I lose sleep to this day over wondering what else I might have done or said to drive home the importance of acquiring immediate expert legal counsel when my mind drifts back to some of these cases. I lie awake sometimes wondering why my words of warning fell on silent ears. Simply stated: a lay person or court appointed attorney going up against a Psychiatrist with knowledge of protocol is a losing proposition. The attorney with good knowledge of civil commitment law working with an AE expert will usually win with the proper medical evidence in hand.

Yet, there is a better way to avoid all this heartache. Prepare in advance with family members for this relapsing remitting disease by having a plan in place when relapse occurs. In my wife’s case, her doctor has ordered 60 mg prednisone tablets orally with a prescribed titration when relapse occurs. Get a good diagnosis by an expert in AE so there is no doubt based on proper medical testing. Proper planning, if the medical condition is known after AE has onset, can avoid civil commitment and a subsequent financial and emotional hardship. Additionally, the AE patient should wear a medical ID bracelet, have their supporting medical documentation in a portable binder at home complete with MRI, EEG on discs if a prior diagnosis has occurred. Included should be all telephone contacts for their treating physician so they can be called by ER personnel.

And so, like the Thorn bird, a species known for its outstanding ability to sing, I write this blog with the hope that my warning song will be heard and a life saved.

Gene Desotell is a retired police officer with an Associate Degree in Police Science and Bachelors in both Administration of Justice and Sociology

 

 Below are a few selected papers on the topic of Psychiatric Presentations and Autoimmune Encephalitis that are found on our website

Recognizing psychiatric presentations of anti-NMDA receptor encephalitis in children and adolescents: A synthesis of published reports January 2019

The psychopathology of NMDAR-antibody encephalitis in adults February 2019

A transdiagnostic pattern of psychiatric symptoms in autoimmune encephalitis February 2019

Red Flags: Clinical Signs for Identifying Autoimmune Encephalitis in Psychiatric Patients February 2017

 

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Int’l Autoimmune Encephalitis Society is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 

Driven by the knowledge that “Education is Power”, Int’l AE Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones on Face Book, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

 

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


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