November is National Family Caregivers Month, which recognizes and supports all the work caregivers do to support their loved ones with autoimmune encephalitis. There are over 53 million Americans who are unpaid caregivers to family, friends, and neighbors. Caregiving often has a significant impact on the life of the caregiver. It can make maintaining your physical and mental health more difficult and strain work and social life.
Being a family caregiver is difficult in the best circumstances, but the COVID-19 pandemic adds an additional layer of stress. As a caregiver for a loved one with AE, you make sure they take their medication on time (no easy task, given the many prescriptions required); keep their medical appointments; help them through the day one hour at a time. An AE caregiver has even more responsibilities. They advocate for the right diagnosis and treatment, fight insurance denials and medical bills, read up on literature, set up travel itineraries, seek second opinions, and the list goes on.
We are amazed by the inner strength caregivers in our AE community exhibit. When listening to your stories, we honestly don’t know how you manage it. We know you may have had to pause your career, watched your friendships take a back seat to your caregiving, and experienced an overwhelming responsibility you shoulder alone. We see you, and we recognize everything you are doing to support your loved-one with AE.
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.
Nutrition is also essential, but maintaining a healthy diet, to keep your immune system in shape, and getting sufficient sleep is not always easy when caring for someone with AE. Your loved one may not sleep for days and then may rest for days afterward. When they are sleeping, you may think it is the perfect time to get things done, but start by taking a break yourself before starting on the things you need to do. It might also be good to get a break from caring every once in a while, and have someone you trust, be with your loved one with AE for a few hours a week. This gives you time to recharge your battery.
We are here to support you, offering support groups and an online community. If you have a specific question, please don’t hesitate to contact us.
Sending you a big virtual hug!