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November 18, 2017 | Barbara Vujaklija, RN

Some of our members are the caregivers of precious sick children and others of struggling adults. Some members are both AE warriors and caregivers. They may have children sick or healthy or an adult loved one who needs them. Life goes on around the uncertainty of AE. Many have full time jobs outside the home that competes with the time needed to take care of their charge. No matter what the situation caregivers have many things in common. The work it takes to care for their loved one, the time they dedicate to advocate for them sometimes fighting the system tooth and nail to achieve a reasonable outcome. The frustration they feel and the worry for the future are but a few common threads. Above all, the most important quality caregivers possess is that they GIVE of themselves every minute of every day for their loved ones are ever in their thoughts and hearts.

I once had the title of caregiver. I was paid to care for people in their homes but most of our caregivers are family or friends and rarely is financial compensation involved. Now my adult daughter is my unpaid caregiver with my husband lending a hand when his own health permits. Talk about role reversal who is mother and who is child? What happens to the relationship of spouses or lovers who have to provide personal care? Where is the line drawn for the parent of a sick child who still needs discipline and guidance? I said that what our caregivers have most in common is their devotion in giving of themselves at all times. Waking, sleeping, working outside the home, always in some part of the mind is the worry: is everything OK? Does my charge need me? How do these superheroes manage a daily life that is so uncertain, never knowing from one minute to the next what may happen to that precious person? Life for AE warriors can change in a second, not a month or a week or day but in a second. So therefore, does the life of the caregiver. The caregiver may need to switch from one role to another in the blink of an eye based solely on the needs of the person struggling with this unpredictable disease.

How do we thank our caregivers? What can possibly ever be enough? Often, we cannot think of the words we would use to thank them. At times we forget all that they do for us. At other times we are so sick we verbally abuse them for they are the closest to us and therefore the one we lash out at. When we are capable and remember to say thanks, it never seems enough to us or to them. So, what can we do? We AE warriors, fighting our own inner demons, to give of ourselves? How can we let them know, not always in words, that their constant vigilance is our lifeline? That the reassurance of knowing we have someone in our life who is there acting as our guardian and protector in our fluctuating world is precious beyond measure? That what we have to spare is theirs? How do we let them know that we are aware of what it takes and although “Thanks” is not enough, our thanks is what we have to give? This Thanksgiving season (in America) we honor our Caregivers and give our THANKS and LOVE for all they do for us and all we put them through. We are thankful for you every minute of every day

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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.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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