AE affects the whole family. In a study recently done led by Dr. Anusha Yeshokumar, it was found that caregivers caring for an individual with anti-NMDAR encephalitis experienced a moderate to severe caregiver burden. Caregivers may experience anxiety, distress, anger, and depression. It differs from person to person, as AE differs from person to person, but what every caregiver has is common that they have been through a traumatic event, and that is important to acknowledge and to seek support for.
Caregivers play an important role in AE, as they need to advocate for their loved ones in all disease phases. It is not uncommon for caregivers to spend the time their love ones are asleep, researching papers and finding resources. Even though this is necessary, they are often exhausted. It is important to find a moment in the day to have to yourself. You may feel guilty taking a short walk outside, because your loved-one is not able to do that, and you feel your time is better served with them. Try to remember that in order to care for your loved one, you need to have the energy to do so. Taking a short break, means recharging your battery .
Some services that may be helpful, include in-home assistance (home health aides or personal care assistants), respite care to provide breaks from caregiving, support groups, and ongoing or short-term counseling. You also may need to ask your family, friends, and community members for help with your loved one’s care, so that you don’t get burned out. Check with your health insurance to see what services are covered.
Practicing self-care is vital for a caregiver because if you don’t keep up your (mental) energy, you can’t optimally care for your loved one. We know this is easier said than done because there is always something to do. But a few minutes a day can have a very positive impact on your own (mental) health. Meditation, yoga, and spending time outdoors are a few examples proven to be effective in managing a stressful life.
Every day I arise, not knowing how our day will unfold, with hope that the treatment he is receiving now will bring his miracle. Alex was quiet and kind. He had the quickest wit and funniest personality. His brain was like a sponge and his retention was unbelievable.
Our son, Alex was misdiagnosed for 7 years. Finally, he was diagnosed by his 6th Neurologist with Anti-NMDA Receptor Encephalitis in 2016. This road we travel began in 2009.
Alex experienced neurological symptoms and they increased in severity and number. He experienced motor neurological symptoms, cognitive symptoms, demonstrated global confusion and would say over and over again, “I don’t know what is going on.” We embraced him with hugs, love and much reassurance that he would not be alone and that we would walk by his side every step of the way. Sleep disruptions including severe insomnia, changes in his visuospatial functioning, gastrointestinal symptoms including rectal bleeding. He had decreased appetite and lost 20 lbs. Things continued to worsen. He didn’t remember who he was, he had a hard time walking, balance and lost his ability to write. He would have bizarre movements, later to find out they were choreoathetoid movements. He also experienced psychosis, catatonia, muscles pains, agitation and aggression.
No answers, only more questions. I have not counted the endless appointments with the medical field, including many physicians, psychologists, OT, PT, etc. and hospital stays. And the endless nights without sleep. He was like many, diagnosed with a mental illness by several in the medical field and as we all know it is hard because those labels stick. Other doctors were thinking it could be a neurodegenerative disease and many tests were done. At one point, we were told that these diseases progress rapidly, so be prepared.
I know in my heart that I needed to keep searching for the answer until it was found. I wanted peace for my son!! I researched day and night and asked about many diseases. I would have a list and share with the doctors. Could it be this? Or this? Or this? Some doctors were professional and seemed to care and would listen and some would not. I was with my son 24-7 and I would have to share what he was experiencing because he couldn’t.
I have files, folders and a box full of paperwork that follows and marks our journey that has defined our life for the past 10 years.
You struggle and fight for your loved one over and over again to get a diagnosis and the proper treatment. At one point it was suggested that we join a support group. Yes, that would be great, but with no diagnosis which one do we join? A church friend was sharing that Alex “just has a brain problem.” And insurance was saying it was only a “brain protein condition.” That was a reason that some testing was denied.
I am the most extroverted in my immediate family, but I am not sure that one would define me as an extrovert. But when it comes to my son and advocating about this disease I guess you would label me an extrovert. I have to be the LOUDEST, the CLEAREST and the BEST on this stage as an advocate for my son and others who suffer this disease. Especially when early diagnosis and aggressive treatment greatly improves outcomes, while delayed diagnosis and treatment can lead to permanent brain injury and/or loss of life.
Our son, Alex had a smile that brightened any place he entered. He was an avid reader and loved to learn. With much struggle he finished the last class he needed to graduate from the Ohio State University with a BA in Psychology. He chose Psychology because he wanted to help people live better lives and be the best they could be. Unfortunately, after this disease, he cannot do that for himself (let alone for others). So, we as “Team Fledderjohn” will advocate for him and help others as he wanted to help them. As Ralph Waldo Emerson said, “The first wealth is health.”
From one caregiver to another…never stop researching…never stop asking questions…never stop looking for the answers…never stop hoping. ”Knowledge is strong medicine.” The road traveled was a long, dark, scary, lonely and isolated one. We must continue on, but remember we walk on, walk on together.
The term “self-care” may conjure up visions of expensive spa days or vacations. But Self-Care means caring for your body and mind, consistently. Care for your body includes creating a routine for diet, exercise and sleep, while care for your mind is associated with thoughts, emotions, and feelings, and may include yoga and mindfulness. It is all about making (small) changes to your daily routine, that will have a lasting positive effect on your health and well-being. Remember… You can’t pour from an empty cup. You must fill your cup first.
Some simple Ideas to Make Self-Care Part of Your Day
Lotsa Helping Hands is a free caregiving coordination web service that provides a private, group calendar where tasks for which a caregiver needs assistance can be posted.
Financial Steps for Caregivers: What You Need to Know About Money and Retirement is designed to help you identify financial decisions you may face as a caregiver.
Lots of resources on various topics, like finance and legal support.
Finding respite care in your area.