November 25, 2020 | From the IAES Community

IAES wishes to honor all those caregivers that have not only loved, helped and never given up on all those with any form of AE but who have also helped all those suffering or have suffered from all forms of illness! Below are some thoughts and writings from both caregivers and those who wish to thank the many caregivers who have helped them.

We honor all of you….

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This is from my experience as a person with AE receiving care | By Mari Wagner Davis

As a person with autoimmune encephalitis, I woke up not knowing what had happened to me. I had to ask my husband, Geoff, what had happened. 

Despite my having a brain injury and forgetting so much of the last six years, his answer to me when I say, “I got so stupid,” is “You’re not stupid, you just forgot some things.” He’s had to figure out bank accounts, paying bills, our children’s college loans – well, you name it. Never during this time has he complained; instead, he has done his most to make me feel as capable as possible. Sometimes, it wasn’t much; other times we had a lot to celebrate, such as when I passed a special driver’s test, and most recently when I finished reading my first book in four years. He has been thoughtful and the best caregiver while still trying to allow me to do as much as I possibly can.

The life of a caregiver is not easy. They balance their own schedules with our needs. They balance concern with encouragement. They balance their own time with time for the things we need. They squeeze in time for our appointments, meds, questions, all without ever letting us know that their time is squeezed.

One thing I know is that the life of caregiver is one born out of love; no one would ever do all that they do except for love.

~Mari Wagner

My Life as a Caretaker | By Timothy Crossley

Being a teenager while juggling school and caring for my mother has its stresses. It’s hard for me to find her lying on the floor, seizing. I keep my schoolwork done at school so that when I’m at home I can keep an eye on my mother. I’m always asking how she’s feeling.

That’s my life as a caregiver.

~Timothy Crossley

Caregiver Tribute| By Linda Lowther and Amy Crane

I was having tremors and a very unsteady gait for about five months. I had been misdiagnosed by a neurologist with early-onset Parkinson’s disease. But as a nurse for 20 years, I knew something more was going on. One day in March 2015, I woke up and told my husband that I thought I was getting the flu and felt ill, so I called my manager to say I wouldn’t be in for work. That night when my husband returned home, I was unconscious and couldn’t be woken up. He called an ambulance and then called my sister. She then called my parents and brother, and all came to see me at the hospital. I was on a ventilator – I was unable to breathe on my own and was in a coma for two weeks.

I was then sent to a rehab hospital for over a month. I had to learn how to walk, talk, eat, write and spell all over again. My husband had told the MDs at the rehab facility that my parents had to take care of me. So, my parents had me move in with them to my childhood home. They took care of me because mentally I wasn’t able to do much for myself. They worked with me on word searches to help me improve my memory and so on.  My sister came to see me almost every night and would help to give me baths when I couldn’t do much for myself. This went on for over four years until I was well enough to drive and live on my own again.

If it wasn’t for what my parents did, such as my mom talking with me, singing with me and helping me, I truly would not be where I am today.  And my sister with her many sleepovers and sisterly talks helped me so much.  My mom and sister also helped me deal with my divorce when my husband filed for divorce after I was well enough to understand, something that was really hard on me mentally and physically.

I’m so grateful for my mom and sister for being the best caregivers ever. I love you with all my heart and I thank you for all you’ve done for me every single day, even up until today. I would not be where I’m at if it wasn’t for you, your love and support. Your caring hands enabled me to get well enough so that I am buying a newer, smaller home which I am very excited about! I truly cannot thank you two enough for all you have done for me and that you continue to do on a daily basis. I truly would not be where I’m at today without you. Love you mom.

~Linda Lowther and Amy Crane

Strength in the Storm and Beyond | By Tabitha Orth

Each case of autoimmune encephalitis claims many victims. While the focus is centered on the AE patient, it is the family caregivers who are the unsung heroes in every case.  Like a level 5 tornado, AE descends.  The routine calm of our daily lives is left in tatters from the torrent of destruction that struck out of nowhere.  What is left is not recognizable to what was just a short time before. 

It is the family caregiver – our spouse, parents, family members and partners – who are thrown into this traumatic, life-threatening upheaval and left to navigate the course of our care. While in shock, they must learn to navigate the medical complex, find an expert in the field of autoimmune neurology, understand the disease and its treatments, advocate for our best interests and keep a sense of normalcy going at home. Often, the patient is their confidant, so they are alone in making decisions and put their own losses, pain and suffering aside to care for us. They don’t voice their fears to us because we are not capable of answering their concerns. Their bravery, sacrifice and determination, all fueled by their unwavering love and devotion, propel them forward through the eye of the storm.

How do we say, “Thank you?” What do you say to the person who saved your life, shouldered the pain, worries and responsibilities all on their own with no concern for their own wellbeing?  They nurture us. They encourage us. They keep us safe through the process of our battle with AE.  Our caregiver has always been center stage in helping us reach recovery through our rehabilitation efforts, while shouldering that immense burden in silence.

I am here because my husband made sure I would survive and thrive. I am here because my son has always shown me patience, love and guidance.  The sacrifices they have made in order to do all the heavy lifting, pouring all their energy into my health and wellbeing, is why I am here today. 

November is National Family Caregiver Month. Please join me in shining a light on the unsung heroes of our AE journeys.  Without them we would not be where we are today.  With all that I am and all that I have, I thank each one of you. Thank you.

~Tabitha Orth,

President and Co-founder,

International Autoimmune Encephalitis Society

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We hope you find the following articles for caregivers helpful!

Disability & Health Information for Family Caregivers | Article from the Centers for Disease Control and Prevention

Caregiving can be stressful no matter how much you love your family member. Autoimmune Encephalitis is often a disease that takes time to recover from and some individuals will continue to have ongoing disabilities that does not mean that they cannot have a fulfilling life. Adjusting to what life used to be or look like requires time for both the person with AE and their family members. This article talks about how caregivers can care for themselves.

Neuropsychiatric symptoms and caregivers’ distress in anti-N-methyl-D-aspartate receptor encephalitis | Research published from the Chinese Academy of Medical Sciences and Peking Union Medical College

This journal article, published in September 2020, found that patients with anti NMDAR encephalitis often present severe neuropsychiatric symptoms, which aggravate the burden on caregivers. Immunotherapy significantly improves neuropsychiatric symptoms, and thus reduces the distress of caregivers.

FDA Listening Session: Discussion on living with a rare disease during the pandemic | Video from the National Organization for Rare Disorders (NORD)

National Organization for Rare Disorders (NORD) and FDA co-hosted a virtual “listening session,” during which the rare disease community had the opportunity to share their experience living with a rare disease in the pandemic and submit questions in advance directly to FDA staff. Listening sessions are meant to facilitate expeditious sharing of patient and advocate perspectives on how their disease and treatments affect their lives.

ABLE Accounts | Financial resource 

For disabled individuals or families caring for a person with a disability, an Able account allows you to save money to provide care without being taxed on it. This can include medications, therapy, food, housing and other disability needs. The Able Act currently only applies to those who become disabled before the age of 26. This article explains much more about Able accounts. Able accounts are provided by more than one provider, so one should look at the rules and how each works to find the best for you.

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Become an Advocate by sharing your story. It may result in 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